Gemeinschaft - Community

SCHWANGER MIT STOMA – ZWEITE SAMMLUNG (PREGNANT WITH AN OSTOMY – SECOND COLLECTION)

IMG_7400Letztes Jahr veröffentlichte ich einen Artikel über 14 Frauen und ihre Schwangerschaften mit Stoma. Zu selten werden Erfahrungsberichte darüber öffentlich und die Reaktionen auf den Artikel waren dementsprechend einfach nur wundervoll. So viel Zuspruch, so viele Engagement der Gemeinschaft und so viele wertvolle Informationen für uns Stoma-Trägerinnen. Ich war vom Feedback und auch Dank diesbezüglich sehr gerührt und möchte mich an dieser Stelle bei allen Frauen beider Artikel von Herzen für Ihre Zeit und Offenheit danken. Ihr könnte euch gar nicht vorstellen, wie vielen anderen Frauen damit Angst genommen und Mut gemacht wird! Deswegen präsentiere ich hiermit sehr stolz den zweiten aber auch letzten Artikel mit weiteren neuen 11 Frauen aus aller Welt und ihren Geschichten. Den ersten Artikel könnt ihr HIER lesen. Es gilt wiederhin: Jeder Körper ist anders und es gibt keine allgemeingültigen Regeln. Aber diese zweite Sammlung enthält wieder beeindruckenden Erlebnisse vom Wunder der Geburt und starken Müttern. Es ist wieder sehr viel Lesestoff, das sei an dieser Stelle gesagt. Ich stellte die gleichen Fragen wie letztes Jahr und möchte damit meine Berichterstattung zum Thema Schwangerschaft abschließen. Die Umfrage beinhaltete Fragen zur Gesundheit vor der Schwangerschaft, wie sich das Stoma in der Schwangerschaft verändert hat sowie weitere interessante Punkte wie die Komplikationen, Arbeitszeiten und tatsächliche Geburt. Die Inhalte sind unverändert, so wie es mir übermittelt wurde. Da wir hier erneut international unterwegs sind, verbleiben alle Antworten in der Originalsprache – bitte benutzt Übersetzer, wenn ihr mit den englischen Texten nicht zurechtkommt. Copy + Paste!

Last year I published an article on 14 women and their pregnancies with an ostomy. There is simply not enough information available about that so the reactions were wonderful and often came from the heart. So much encouragement, so much engagement from community and so much valuable information for ostomy women. I was deeply moved by the feedback and gratitude I received and would like to thank all those women from last year as well as this year with all my heart for their time and openness. You cannot imagine what you accomplished – how much fear was scattered and how much reassurance was given to those in doubt. So I hereby proudly present the second and also last article with another 11 new women from all over the world and their personal stories. The first article can be read HERE! The same rule applies again: Everybody reacts different and the rule is that there are no rules. But this collection does yet again share impressive experiences about the miracle of childbirth and strong women. The article is quite long and only worth your time if you are interested in the pregnancy topic. Questions stayed the same –  questions I asked those women were referring to their health before the pregnancy, how their ostomy changed throughout the pregnancy and even more e.g. problems they had to cope with, work schedules and birth itself. The content stays unchanged of course and since we are on international ground again, the answers stay original. Please use Google translate if you are experiencing problems with the German answers. Copy + Paste!

Vorerkrankungen – Illness that led to ostomy
7x MC
6x UC

Stoma-Komplikationen – ostomy-related complications
1x Nichts / nothing
3x Hernie / hernias
3x Prolaps / prolapse
3x Blockade oder verdreht / obstructions
2x Stoma-Not-OP in Schwangerschaft / emergency ostomy surgery while pregnant
1x Problem mit J-Pouch + Endometriose / J-Pouch didn’t work properly + endometriosis
1x Hernie + Prolaps + Infektion=Not-OP / hernia+prolapse+infection=emergency surgery

Wurde das Stoma größer? – Did the ostomy grow?
3x k.A./ N/A
7x Ja / Yes
2x Fast nicht / not recognizable
1x mal so mal so / it shrunk too

Geburt in Woche… – Birth in week…
1×28
1×35+39
3×37
5×38
2×39
1×40

Kaiserschnitt – C-Section
11x Ja / Yes
2x Nein / No

1 – LILA / GERMANY @daslilaelement
Ich habe seit dem ersten Artikel nun mein Baby bekommen

1

Erfahrungen aus dem ersten Artikel: Ich wurde dieses Jahr schwanger, bin 31 Jahre alt und ab morgen in der SSW 31. Seit 2008 habe ich – wie die Meisten in diesem Artikel – Morbus Crohn, der bei mir Einiges an Gewebe im Enddarmbereich kaputt gemacht hat. Das führte letztlich zu meinem Stoma. Erst ein Ileostoma, dann ein Colostoma auf Lebenszeit. Seit November 2015 bin ich nun Stomaträgerin, meine letzte OP vor der Schwangerschaft war Anfang 2018, etwa 1 Jahr und 2 Monate vor dem positiven Test, Hernienkorrektur mit Netzeinlagen. Tatsächlich wurde mir von den Ärzten suggeriert, dass ich es erst mal probieren soll, schwanger zu werden, bevor zu diesem Thema weitere Gedanken verschwendet werden würden. Man schien nicht wirklich optimistisch und ich ließ mich davon auch etwas verunsichern. Gerade, weil der Kinderwunsch für mich ein sehr komplexes Thema war und ich nun endlich sicher war, ein eigenes Kind wäre eine gute Idee. Wie auch SABINE, habe ich von Anfang an meinen Zyklus im Blick gehabt, um unsere Chancen zu optimieren. Ich wurde im zweiten Monat schwanger. Ich nehme seit Jahren konstant 200mg Azathioprin, was nun in der Schwangerschaft beibehalten wurde. Mit meiner Krankenhistorie im Blick haben meine Ärzte und ich diese Entscheidung getroffen. Vor der Schwangerschaft hatte ich nur immer wieder große Probleme mit Hernien, mehrere davon, eine musste sogar mit Not-Operation behoben werden, weil Darm eingeklemmt war. Das ist auch meine Hauptsorge bei der Schwangerschaft in Bezug auf das dritte Trimester. Ich habe nun tatsächlich wieder eine Hernie und meine eh schon schwache Bauchdecke schmerzt. REBECCA geht es hier sehr ähnlich, auch sie hat trotz Netzeinlage in dieser Extremsituation wieder eine Hernie entwickelt. Wie sich das nun in den nächsten Wochen noch entwickelt, vermag keiner zu sagen und muss sehr gut beobachtet werden. Zu Beginn des dritten Trimesters habe ich meine Hollister-Versorgung angepasst – größere Platten, die ich weiter ausschneiden konnte, da mein Stoma breiter geworden ist. Es unterläuft mir vielleicht etwas öfter im Moment, aber das ist kein wirkliches Problem. Ich habe bis vor zwei Wochen Vollzeit gearbeitet und habe nun ein 50% Beschäftigungsverbot. Die Geburt wird mit einem geplanten Kaiserschnitt ab SSW 37+ durchgeführt, weil ich zu viele Baustellen habe, die mit einer natürlichen Geburt unnötig verschlimmert würden (Hernie, Bauchdecke selbst, Vernarbungen, Fistel). In der Tat sind wir sehr glücklich und erleichtert, dass die Schwangerschaft bisher ohne Katastrophen verlaufen ist. Uns is bewusst, wie dankbar wir darüber sein können. Trotzdem war es nicht immer schön, zwar hatte ich keine Übelkeit, dafür aber heftige Probleme mit den Hormonen. Auch das Gefühl der körperlichen Abhängigkeit meiner Tochter an meinen von Krankheit gebeutelten (ja, Wortwitz) Körper empfand ich niemals als angenehm. Es verbleibt ein Wunder, das Leben in mir, und ehrlich gesagt möchten wir das nicht erneut riskieren. Auch hier bin ich wie REBECCA, wir wollen das Glück nicht erneut herausfordern. Das ist eine individuelle Entscheidung, man kennt sich und seinen Körper am Besten, das verbleibt auch in der Kugelzeit so. Da wäre ich auch schon bei meinem Rat. Man muss auf sich hören, mutig sein und sich gut vorbereiten. Wie CERIMAR hier sagt, ist es besser in Remission schwanger zu werden. Die Wahrscheinlichkeit, in Remission zu verbleiben, ist z.B. bei Crohn, dann gar nicht schlecht. Man sollte versuchen, sein bestes gesundheitliches Ich zu erschaffen. JENELL sagt auch, dass es gut ist mit Ärzten, Chirurgen und Gynäkologen eng zusammen zu arbeiten, um deine individuelle Situation für dich und das Baby zu optimieren. Das Wunder ist die Reise, auch wenn sie erschwert ist, wert!

Ergänzende neue Erfahrung: Am 07.10.19 wurde ich – nach meinem bisherigen Beschäftigungsverbot auf 50% – vollends krankgeschrieben. Das war drei Wochen vor dem eigentlichen Mutterschutz. Ich war sehr froh, dass ich die Last der Arbeit nicht mehr tragen musste, obwohl meine Kollegen mir schon helfend unter die Arme gegriffen hatten. Aber jetzt konnte ich mich auf mich und das Baby konzentrieren und so entspannt wie möglich auf die Geburt hin fiebern. Wie ANDREA empfand ich den wachsenden Bauch mit seinen Verwachsungen eher als schmerzhaft. Rückblickend kann ich vielen der Frauen zustimmen: Mein Crohn war so ruhig wie schon Jahre nicht mehr, denn auch unter Medikamente war es immer mal wieder ein wenig unruhig gewesen. Meine Hernie wurde immer größer und schmerzhafter, weshalb ich den Tag der Geburt dann richtig gefeiert habe. Unsere Tochter wurde am 19.11.19 mittels geplantem Kaiserschnitt geboren. Das war dann 37+1, unter anderem deswegen so früh, damit ich mit meinem Bauch und seinen Verwachsungen sowie der Hernie keine Wehen erlebe (so wie bei CHARLOTTE) und es für das Baby stressfrei verläuft. Wie bei REBEKAH war auch bei mir mein Chirurg auf Stand-by, falls sich währenddessen unerwartete Probleme ergeben würden. Alles verlief jedoch sehr gut, Ärzte und Schwestern waren toll und unsere Kleine kam gesund und munter zur Welt. Sie ist wahrlich ein Wunder. Der Kaiserschnitt an sich und diesen zu verkraften, fiel mir leicht, da man doch schon ein paar ganz andere Operationen gewöhnt ist. Wirklich Probleme haben mir nur meine alten Verwachsungen gemacht, denen nach dem plötzlichen Druckverlust im Bauch der Halt fehlte. Bewegungen waren höllisch schmerzhaft und das hielt etwa zwei Wochen an. Durch die Hormone nach der Geburt war meine Verdauung wochenlang durch den Wind und ich befürchtete einen Schub (der Gott sei Dank nicht kam). Meine Hernie ist nun kleiner geworden, dass aber alle Organe wieder ihren Platz finden, hat bei mir immer wieder zu kleinen Blockaden geführt. Die ersten Wochen nach der Geburt waren also von Krämpfen und Schmerzen erfüllt, aber auch das ging vorbei. Meine alte Versorgung passt nun wieder und auch ansonsten bin ich nun, zweieinhalb Monate danach, wieder sehr viel mehr ich selbst. Wie NICOLE muss ich sagen, habe ich den Fakt, ein Kind heranwachsen zu lassen, einfach nur als extrem machtvoll empfunden. Ist der Körper nicht Wahnsinn? Je länger es nun zurückliegt, desto mehr denke ich, dass es trotz den Beschwerden eine gute Zeit war und die Natur das schon richtig macht, denn man erinnert sich viel besser an die schönen Momente als an die schlechten. Sonst würde das doch keiner freiwillig noch mal machen, denke ich mir. SHAUNA sagt es genauso wie es ist: Man weiß nicht, was auf einen zukommt und doch wagt man es, weil man dieses Baby so sehr möchte. Keine einzige Sekunde möchte ich meine süße Tochter mehr missen, denn sie ist das größte Geschenk, das ich in meinem Leben je erhalten werde. Und früher dachte ich immer, solche Sachen sagt man halt so bei dem eigenen Kind. Aber man fühlt das tief im Herzen, diese besondere Liebe. Vor wenigen Wochen fing sie an, uns aktiv anzulächeln und ich weinte vor Freude. Ich glaube, das sagt schon alles.

2 – REBECCA via FACEBOOK / GERMANY
Hat seit dem ersten Artikel ihr Baby bekommen

Rebecca2

Erfahrungen aus dem ersten Artikel: Der voraussichtliche Geburtstermin ist im November 2019, dann bin ich 36 Jahre alt. Seit 2003 habe ich Morbus Crohn. 2013 bekam ich ein Colostoma nach Entfernung 3/4 des Dickdarms, 2014 dann die restliche Entfernung mit Anlage eines Ileostoma und 2015 dann die komplette Entfernung des Rektums. Es hat über 6 Jahre gebraucht, schwanger zu werden, aber nur, weil die Ärzte mein Hashimoto (Chronisch entzündliche Schilddrüse) nicht erkannt haben und somit mein Hormon Haushalt völlig im Eimer war. Vor Schwangerschaft 6 Jahre mit Stoma, seitdem medikamentös austherapiert. Seit 2015 eine parastomale Hernie, die dann im Oktober 2018 mit Netzeinlage gerichtet wurde. Durch die Schwangerschaft ist aber an der gleichen Stelle wieder eine Hernie entstanden. Bisher habe ich aber weder Stoma noch CED-bezogen Komplikationen. Stoma wurde nur durch den Bauchinnendruck etwa 5 mm größer. Ich bin seit 4 Jahren Rentner. Bisher war die Schwangerschaft eigentlich sehr schön, zwar anstrengend jetzt zum Ende hin aber das ist ja normal. Eine weitere Schwangerschaft lehne ich aber ab, weil ich froh bin, unter diesen ganzen Umständen EIN gesundes Kind zur Welt zu bringen. Kaiserschnitt-Termin mache ich erst in nächster Zeit aus. Es gibt keinen Rat: Man sollte einfach auf sein Herz und sein Bauchgefühl hören.

Ergänzende neue Erfahrung: Die Hernie besteht immer noch, macht aber bisher kaum Probleme. Sie ist Gott sei Dank auch noch nicht so groß wie beim letzten Mal. Komplikationen habe ich während der Schwangerschaft in dem Sinne nicht gehabt. Zum Ende hin, 4 Wochen vor der Geburt, musste ich ein paar Tage auf die Geburtsstation, weil sich mal wieder eine Fistel inklusive Abszess in der Nähe der Blase gebildet hatte. Dieser entleert sich schlagartig und musste unter Kontrolle, mit Blutkulturen, MRT etc. Gemacht wurde aber so kurz vor der Entbindung nichts, hauptsächlich auf meinen Wunsch hin. Sprich irgendwann einmal, werde ich die Hernie mit Abszess und Fistel mal wieder machen lassen müssen. Ansonsten war die Schwangerschaft einfach herrlich. In den letzten 17 Jahren mit dem Crohn, ging es mir noch nie so gut wie die 9 Monate. In der 38 Schwangerschaftswoche wurde der Kleine dann per Kaiserschnitt am 12.11.2019 um 19:44 Uhr geholt. Maximilian geht es blendend. Er ist ein kerngesundes kleines Wunder. Erholt habe ich mich so Lala. Ich ging alles wieder viel zu schnell an. Durch den Crohn hatte ich leider auch Probleme mit der Narbe, die sich mal wieder entzündete und ein paar Tage mit Fieber einher ging. Auch sonst hätte sich danach alles auf einmal wieder bemerkbar gemacht und mir das Leben mit meinem Sohn nicht gerade einfach gemacht. Sprich Kraftlosigkeit, starke Schmerzen durch die Arthritis und Arthrose. In den ersten 8 Wochen habe ich 20 kg abgenommen (können ruhig noch 20 runter hihi, in der Schwangerschaft habe ich ja nur 10 kg zugenommen). Ansonsten haben wir uns sehr gut eingelebt, er ist so unglaublich lieb.

3 – REBECCA via INSTAGRAM / UK @rebecca__judd

REBECCA

I fell pregnant December 2016, 17 months after getting my permanent stoma 17 months beforehand. I was 28 when I fell pregnant and 29 when I had my son. The reason for having my ostomy was due to Crohn’s Disease, my colon and rectum we’re so badly diseased I had numerous small perforations which led to a number of infections including sepsis. I also have sections of gut that are paralyzed, my colon was non-functioning before they removed it and my stomach to this day is around 30-40% paralyzed (cause unknown). I had a panproctocolectomy, removal of the colon, rectum, appendix and anus. It took myself and my partner a year of trying before we conceived. I truly believe my body just wasn’t fully healed before this point and I wouldn’t have been able to successfully carry before then. We miscarried twice in those 12 months, very early on in the pregnancies, it was really difficult because I just thought it would never happen for us especially being told it was highly unlikely we could get pregnant after such a big surgery, lowering my fertility to around 15/20%!

Luckily for me and quite common too, I went into a full remission state during pregnancy, I didn’t have to take any additional medications other than the vitamins recommended. The only issues I faced were down to the gut motility being so slow which worsened as the bump got larger and caused more pressure. I did get a small hernia to the side of my stoma as the bump got bigger. I never had any issues before pregnancy with my stoma. The main issues I personally experienced while pregnant that affected my stoma, was that it did stick out further which I was told was normal, in appearance it looked swollen and so my bags were needing to be cut a little bigger. I’ve always used convex bags and these worked well for me personally however some people find they may need to try standard bags or concave depending on their stoma placement on the bump! I was a full-time dog walker (pet services) right up until 8months pregnant, I found being more active helped me with pressure build up behind the stoma. I think maybe if I was at a desk job I would have left sooner. I had planned for a natural birth but totally open to whatever was going to happen! Unfortunately for me I experienced a LOT of complications during labor. Not to scare any one off but for me personally this is what happened. My stomach paralysis worsened during labor and so I was getting bile build up in my stomach. Unknowingly my son had the cord around his neck twice too and so his heartrate kept dropping with each contraction. I ended up having an emergency c-section under general anesthetic because they needed to aspirate me (they couldn’t risk my stomach contents coming up while being awake and me possibly choking on it)! It was a roller coaster of emotions as there were more complications while I was under general! My gut was adhered to my womb and abdominal lining so once my son was safely removed I had full on gastro surgery to remove all the adhesions. I had the full gastro team in on the c-section incase anything needed to be done so I’m really thankful for that because they were most definitely needed. He was born 40+2 days so I went full term in September 2017.

Recovery, although sore, was actually fine! I got myself up and walking the same day (I don’t think any sort of pain compared to the panproctocolectomy I had). My baby boy was fit and healthy, had a perfect latch on to my breast and I was able to breastfeed for 6 months until my Crohn’s flared back up again. A question I haven’t been asked but thought I should share is how my body was affected after birth! Unfortunately, and quite commonly after your body has stretched to the max making a baby, more adhesions are really common! I had strictures all behind my stoma and so 9 months after having my son I had my stoma refashioned as I could not pass any waste at all. Signs I noticed that were important to look out for were stoma discoloration, stoma swelling, pain when passing stool, pain on and off and just passing liquid stool. After the stoma refashioning I was doing great. My advice for any ostomate wanting to conceive is to really listen to your body, you know yourself better than anyone. Don’t make it a chore to be intimate, have fun and relax. Don’t worry about your stoma if you get pregnant, again look out for any changes, get it checked if you’re unsure and trust your body! Finally get yourself a good obstetrician, one with experience in ostomy pregnancies as we are higher risk! Keep in touch with your gastro team too because they will do more blood work for you between midwife appointments.

4 – TINA via INSTAGRAM / UK @tina_barlow_

TINAWe fell pregnant in March 2019, I was 28. I had my colostomy due to fistulising Crohn’s and a series of recurring anal fistulas. We had no issues falling pregnant and fell pregnant pretty quickly after getting married and coming off the pill. I had my colostomy for 18 months before falling pregnant. I currently do not take any medication and did not during pregnancy. I had no stoma-related issues prior to falling pregnant and none during my pregnancy. My ostomy changed in size towards the end of my pregnancy when my bump was growing fast, so I needed new bags as I chose ones with a bigger base plate so ensure it stuck to my ever-growing tummy. I continued working full time 41.5 hours a week right up until 11 days before I had my baby. My perception on the pregnancy was that it is such a wonderful gift to be able to carry and grow a child however I wouldn’t rush to do it again as I am still on the waiting list for more surgery as we had to put this on hold whilst I was pregnant. I found it very tiring especially with my illness and b12 deficiency. I’m very thankful that my Colostomy allowed me to be pregnant and have my child as my life before my ostomy wouldn’t have allowed for pregnancy. I would never say no to another baby but not any time soon. 🙂 Our little boy was born at 37+1 via planned c-section due to them thinking he was too small. The recovery was good, I was home after 2 days (my choice to stay for additional support in breastfeeding) and up and about a few days later. Thankfully I had no problems following my section and my scar is healing well. Our little one was only 5lb 3oz (2.475kg) when he was born but he is thriving and gaining weight really well. My advice to anyone with an ostomy who is thinking about having a baby becoming pregnant is, just do it!! Speak to your consultant and stoma team as 99% of the time you can have a very normal pregnancy with no complications. It’s not easy but then pregnancy isn’t anyway. If you are in the UK like myself expect to be under the consultant and to have plenty of hospital appointments. I can’t fault the care I was given by our wonderful NHS! Honestly becoming a mummy is the best thing ever and I wouldn’t change all the stretch marks and sleepless nights for anything!

5 – ADRIANNE  / USA

I was 26 when I was diagnosed with UC and at the same time as my first miscarriage. Doctors speculated that my UC may have been triggered by pregnancy hormones. I quickly became pregnant again and had a successful pregnancy with my now 2 ½ year old lively son. My disease progressed quickly and med after med was failing. Prednisone always seemed to mask the symptoms and when I would begin to wean off, the biologic would fail (Humira and Remicade). At 29 I was pregnant with my second son when the flare of all flares hit in December of 2018. As soon as I became pregnant (this was after a missed miscarriage) I began to flare, it was until about 12 weeks when it hit hard and there was no turning back. No matter what I did I was losing weight rapidly, continuous blood, 25+ BMs a day, my body ultimately became so weak I could barely get out of bed. My body rejected all meds, including a very high dose of Remicade, IV steroids, a small stint of Xeljanz and then my doctor hit me with my last resort. At 17 weeks pregnant, and weighing in at less than 100 pounds I was challenged with a decision I never could have fathomed for my life. I had an emergency sub-total colectomy in order to save mine and my babies life. Dealing with surgery being pregnant was a little difficult as I didn’t want to take pain meds while being pregnant and I was worried everything could potentially affect the baby. Once I got the hang of an ostomy, being pregnant with one was honestly a breeze. After I coped with the body image changes I had no issues. I used flat Coloplast Sensura Mio bags and never had one leak or issue (it was so easy that I didn’t even know leaks existed). I could eat and do whatever I wanted without any issues, I had no clue life could be this good since I was struggling for so long. I was and have been med free since my surgery and it’s amazing to not feel medication side effects anymore. I dealt with 3 prolapses because of the intraabdominal pressure and the massive amounts of sneezing I was doing during allergy season but was able to successfully reduce at home on my own. I have never had one since, not even during labor for which I feared. The doctors just thought it was from all the pressure in my abdomen and the growing size mixed with the sneezing. I’m just thankful they have never happened again because they are super scary, very painful and pretty gruesome looking at your intestines just spilling out. My biggest tips, free people shirts are amazing for being pregnant with an ostomy and Becca by Rebecca Virtue one-piece swimsuits saved my life, I am not one to show off my ostomy bag and these products hid it like a dream. I was lucky enough to be off of work (I am an occupational therapist) most of my pregnancy on medical leave due to hospitalizations and surgery. I was induced at 39 weeks (as my delivery hospital was 3 hours away) and had a vagniale delivery. My beautiful baby boy was born on 8/2/19 and has been an absolute dream. Every time I look at him I see our journey together and the strength he had to hold on and thrive and the courage it took for me to overcome it all. The future for growing our family remains unknown. What I learned from this experience is tomorrow is never promised, take everything one day at a time, never take a single day for granted, and be kind because everyone is fighting a battle you know nothing about. I am blessed with a husband who has never left my side through it all, 2 beautiful boys, and an amazing family who has helped out tremendously. My scars are my battle wounds to show my strength and resilience through times I didn’t think I would make it through. Having an ostomy has given me a new lease on life one I never knew possible as UC consumed my every waking moment both physically and mentally. I am thankful to share my journey and hope it helps those who need it; just like I needed them through my darkest times and needed inspiration to keep pushing forward.

6 – ANDREA via FACEBOOK / GERMANY

fbt

Nach langem Probieren sind wir in der Kinderwunsch-Klinik-Pause Ende März 2019 schwanger geworden, da war ich 36 Jahre. Die Colitis Ulcerosa begleitet mich schon seit meinem 10ten Lebensjahr, zuletzt jagte ein Schub den nächsten und der letzte Dauerschub war mit Medikamenten nicht in den Griff zu bekommen. Seit Februar 2015 habe ich mein Ileostoma (+ Hartmannstumpf) und bin froh, diesen Schritt gegangen zu sein. Vor der Kolektomie war nicht an eine Schwangerschaft zu denken, danach sah die Situation ganz anders aus und wir gingen das „Projekt Schwangerschaft“ im August 2016 an und setzten die Verhütung ab. Nach einem Jahr ohne Erfolg schickte uns mein Frauenarzt in die Kinderwunschklinik, er wollte nicht lange rumdoktoren, schon alleine wegen meinem Alter und wegen der großen Bauch-OP. Von Mai 2017 bis 2019 waren wir in Kinderwunschbehandlung. Es stellte sich heraus, dass ich keinen Follikel voll ausbilde und somit keinen Eisprung habe und deswegen nicht schwanger werde. Wir haben mit Hormonstimulation von Geschlechtsverkehr nach Plan (bei dem wir 1x Erfolg hatten, das kleine Wunder leider nicht lange bleiben wollte), IVF, ICSI und Kryo alles mitgemacht, ein langer und beschwerlicher Weg mit vielen Tränen und Herzschmerz. Von Oktober 2018 bis Ende März waren wir auf unseren Wunsch in der Kinderwunsch-Klinik-Pause, mal abschalten und Energie tanken. In der Zeit habe ich mich zuckerfrei ernährt und dabei 10 kg abgenommen, weil ich eine Insulinresistenz habe, was bedeutet, dass ich bei jedem Essen sehr viel Insulin ausschütte, damit der Zucker in die Zellen kommt. Der Blutzucker ist dabei nicht erhöht, sondern nur der Insulinspiegel, das überschüssige Insulin lagert sich im Bauch ab und man nimmt zu, ohne mehr als sonst zu essen. Insulin ist das einzige Hormon das dick macht. In der zuckerfreien Zeit habe ich gute 10kg abgenommen. Die Insulinresistenz kann bei frühen Abgängen und Einnistungsproblemen eine große Rolle spielen. Um für den Dritten von der Krankenkasse unterstützen Versuch alles Mögliche abgeklärt zu haben, ging es ab Mitte März 2019 nur für Vor-Untersuchungen in die Kinderwunsch-Klinik. Weil ich unverhofft ohne Hormone einen Follikel ausgebildet hatte, stand Ende März 2019 nochmal Geschlechtsverkehr nach Plan an. Die Ärztin sagte bei dem Versuch: „eine Chance ist eine Chance, ABER versprechen sie sich nicht so viel davon!“ Wir haben uns nicht so viel davon versprochen, hatte die letzten Male ja auch nicht geklappt. Dieser Follikel war ein Volltreffer, im Nachhinein sage ich immer unser „goldenes Ei!“

Vor der Schwangerschaft war der Hartmannstupf ab und zu entzündet, da gab es dann Cortison-Zäpfchen oder Salofalk-Zäpfchen. In der Schwangerschaft musste ich keine Medikamente nehmen, Mr. Hartmann war total entspannt und machte keine Probleme. Im Juni 2019 hatte ich eine Stoma-Blockade, die sich zum Glück noch im Wartebereich der Notaufnahme im Krankenhaus gelöst hatte. Seitdem hatte ich eine merkwürdige Beule am Stoma (Hernie?) wenn es förderte. Es dauerte eine gute Woche bis ich keine Schmerzen mehr hatte, wenn das Stoma förderte. Danach war alles in Bezug auf Blockaden wieder gut, auch bis zum Ende der Schwangerschaft. In der SSW19 waren wir mit Blutungen im Krankenhaus, es hatte sich ein Bluterguss zwischen Gebärmutter und Plazenta gebildet. Viel Liegen und Abwarten war angesagt. Es ist zum Glück alles gut gegangen und nach 14 Tagen Schonung durfte ich wieder arbeiten. Wenn die kleine Dame sich im Bauch gedreht oder gestrampelt hat, war es doch manchmal sehr unangenehm oder gar schmerzhaft. Sie war bis zum Ende der Schwangerschaft sehr aktiv. Sehr unangenehm war es, wenn sie im Bereich vom Stoma anfing zu treten oder in der Bauchmitte, ich denke das sich in dem Bereich Verwachsungen befunden haben. Die Schmerzen in der Bauchmitte waren später weg, wenn sie sich gedreht oder getreten hat. In der SSW 25 musste ich meine konvexe Versorgung (Hollister 26800) auf eine plane Versorgung umstellen, da der konvexe Einteiler zu viel Druck ausübte und total unangenehm saß. Der Wechsel vom System hat super geklappt, es gab zum Glück keine Unfälle. Das Stoma selber hat sich im Durchmesser verändert von anfänglich 22mm auf gute 31mm, mittlerweile ist es auf 25mm geschrumpft. Seit der Entbindung trage ich wieder meine alte Versorgung. Bis zum Mutterschutz habe ich voll gearbeitet (38h Woche), es ging für mich ganz normal 6 Wochen vor der Geburt in den Mutterschutz plus 14 Tage Resturlaub. Die Zeit fand ich doch sehr lang und anstrengend, da immer mehr Wehwehchen dazu kamen. Hatte 6 Wochen vor dem errechneten Geburtstermin viel Wasser eingelagert (3 taube Finger an der rechten Hand), Bluthochdruck und später auch Eiweiß im Urin. Deswegen wurde in der SSW 38+1 beschlossen, dass es Zeit wird das kleine Wunder zu holen.

Wir haben an SSW38+2 mit der Einleitung begonnen, und an SSW 38+5 habe ich unsere Kleine natürlich mit Hilfe der Kiwi-Saugglocke sowie Dammschnitt entbunden, der Chefarzt war gegen einen Kaiserschnitt, da er meine Bauchdecke nicht noch mehr schwächen wollte. Der kleinen Dame ging es bis auf den großen Bluterguss am Kopf (den die Saugglocke verursacht hat) sehr gut. Mir ging es so lala, bei der Geburt habe ich doch etwas mehr Blut verloren, unsere Hebamme hat die Situation aber wunderbar in den Griff bekommen und ich musste zum Glück nicht in den OP. Durch den Blutverlust wollte mein Kreislauf nicht in Schwung kommen (HB zu niedrig), deswegen bekam ich am nächsten Tag 2 Bluttransfusionen, danach ging es mir sehr schnell besser und wir durften nach 4 Tagen nach Hause. Kaum zu Hause angekommen musste unsere Kleine wegen dem großen Bluterguss schon ein paar Tage später ins Krankenhaus, der Billirubinwert (Gelbwert) war zu hoch. Es wurden 12h Blaulichtinkubator angesetzt damit der Gelbwert runtergeht. Die Therapie hat zum Glück sehr gut angeschlagen und nach 2 Tagen durften wir schon wieder nach Hause. 5 Wochen nach der Geburt war ich mit einem Subileus (Vorstufe eines Darmverschlusses) – 5 Tage im Krankenhaus, es wurde vermutet das ich einen Bauchdeckenbruch am Stoma habe (die ab und zu sichtbare Beule seit der 1ten Blockade) und sich eine Darmschlinge dort reingelegt hat. Im CT wurde der Bauchdeckenbruch nicht bestätigt. Was genau den inkompletten Darmverschluss verursacht hat, konnte nicht geklärt werden. Ich hoffe es bleibt für lange, lange Zeit der letzte Krankenhausaufenthalt. An sich war die Schwangerschaft schön aber auch anstrengend, besonders zum Schluss und an manchen Tagen ein großes emotionales Gefühlschaos mit Hoffen und Bangen das alles gut wird. Ob wir noch ein zweites Wunder bekommen, dazu kann ich jetzt noch nichts sagen, die letzten Wochen waren doch sehr anstrengend und müssen erstmal verarbeitet werden. Was ich anderen Stoma-Frauen mit Kinderwunsch auf den Weg mitgeben möchte ist: „Hört auf Euer Herz!“ Eine Schwangerschaft ist trotz Stoma möglich, aber es gilt: „Ihr alleine wisst was Ihr Eurem Körper zumuten könnt!“

7 – SHAUNA via Instagram / IRELAND @chatting_crohns

chatting_Fotor

I got pregnant in the beginning of January 2019 and I was 24 years old at the time. I was diagnosed with Crohn’s disease in 2013 which led to me having an ileostomy since March 2018. I didn’t struggle to get pregnant although I had a miscarriage in October 2018 which was very difficult. I was only 7 months post-surgery at the time and I was still healing. Throughout my pregnancy I stayed on my medication, an injection I got every 8 weeks, called Stelara. Since having my ileostomy surgery, I experienced no complications and have been quite well the whole time. During my pregnancy, my stoma grew along with my bump. It started off at 18mm and eventually ended up at 50mm. It was quite painful as it grew and I had to change bags many times and eventually had to start using flat bags as my stoma became so protruded. I had to take extra care of my stoma and make sure it didn’t prolapse too much. I worked throughout my whole pregnancy, right up until the end and I was back 4 weeks post-partum. I absolutely loved being pregnant, from someone who has suffered from bad health for years I found I enjoyed every minute of being pregnant and I never felt so well in my life. I would do it all again in a heartbeat. It is an amazing time. I gave birth via planned c-section at 39 weeks exactly. The surgery went really well and the baby was perfect. I was expecting to experience complications at the birth but the whole thing went so smooth, we were very well prepared and very relaxed though. The baby was perfect and he weighed 7lbs (3.1kg) born. If you have an ostomy and would like to have a baby, but are afraid of what may happen, I really want to assure you that it will all be ok. I didn’t know what to expect but I knew that I really wanted to be a mother and I would have done anything to have that chance. I feel so lucky every day to have been able to experience pregnancy and have such a healthy son.

8 – EMILY via INSTAGRAM / CANADA @emilyyyyyy444

I’ve had 3 pregnancies, the last one with an ostomy. The 1st one was in 2007 and I had no complications. I was 24. The 2nd pregnancy was 2017. I was in a Crohn’s flare. I became very sick and was hospitalized. I remember begging the doctors and nurses for an ostomy because I felt that’s what would have helped me with the pain. I was too far along in my pregnancy for surgery. I delivered my second baby boy via c-section at 37 weeks. I was 35 years old. My third pregnancy, in 2018, came as a real shock because I was on prednisone and biological drugs. I was a stay at home mom at this point. This time, the doctors knew that I needed surgical intervention.  So, at age 35, at 14 weeks pregnant, when my body was progressing with the pregnancy and my pain was increasing (with my 11-year-old and 9-month-old at home) I had a loop ileostomy performed on October 9 2018 at Mt. Sinai in Toronto. I have had Crohn’s disease for 17 years. I have Crohn’s-Colitis and a very dense stricture in my descending colon. The disease is further down my colon, but is restricted in my colon. I have tried working with naturopaths, dieticians, eastern-medical doctors and western-medical doctors. I tried many different herbs, supplements, diets, medications. I have worked my way through all medications. Now, I am on the highest tier of medications- biologics and there are currently 4 on the market in Canada. I’m only left with 1 option. I welcomed the surgery and was amazed at medical technology. I received general anesthetic and pain meds after surgery. It took 7 weeks to heal but I was feeling better pretty quickly. I could eat! I was really skinny, fatigued, ached all over and my joints were inflamed. My baby was closely monitored and I stayed in the hospital for a week. My OB, GI and surgeon all worked together as a team. It was a positive experience. My surgery was done laparoscopically and my ostomy is pretty high on my belly. Almost par with my belly button. The surgeon said once I’ve had the baby and are settled then we can start talking next steps.

Baby boy #3 was born March 26 2019 via c-section at 37.5 weeks. No complications and he was my heaviest baby weighing 6 lbs. 9 oz. I was doing pretty well and the OB wanted GI staff present, and I also donated my placenta, so we had to schedule that as well. So, I was the 1st surgery of the day and they allocated 2 hours for my delivery and I had 16 people in my room. Currently, my baby is 10 months old and has not experienced any complications. My ostomy, however, has been very challenging since the baby is out of my belly. Now my belly has dips and rolls so my ostomy leaked on the side. It was a learning curve, and I finally found the right tricks for my body. Change the appliance every 3 days. Wear a convex bag with an Eakin ring and belt. During pregnancy, I could not wear a convex bag. I used a 2-piece appliance and bag and had to wear the appliance a specific way. And no ring. It was easy to change the appliance. I was much happier and way more healthier in this pregnancy compared to the last one. Baby boy#2 pregnancy, I only gained 15 lbs. and after he was out of my body, I was the skinniest I’d ever been I’m my lifetime. Although surgery while pregnancy is always a risk- surgery is a risk in itself. I trusted my team of medical professionals. I was not the first pregnant woman for this surgery. I found some relief knowing that. I have spoken to my medical team as I am anxious to relocate this bag. I am now presented with a choice: to keep the ostomy or reattach my intestines and have no ostomy? My life has greatly improved with the ostomy. It really did save my life and that of my baby. I thought I knew that I was going to choose the ostomy… but now I’m wondering if I should try the anastomosis and then have a subsequent surgery if I hate it? I don’t have the answer yet. I am so grateful that the ostomy gives life. So maybe I’ll work up that courage and try.For other women: I’m so thankful for the wonderful gift that the ostomy has given me. And my children are my heart. Having the ostomy really didn’t change anything during the pregnancy or delivery. I was closely monitored and felt that I received excellent care because I had to see so many Doctors!

9 – YVONNE via INSTAGRAM / UK @crohns.mummy

Crohns2_Fotor_Fotor

I had my colostomy with both my pregnancies (my age was 23 and 26) and my stoma just naturally went with it, as my belly got bigger so did my stoma. I have had my bag since I was 20. I had no issues falling pregnant I was very lucky despite all the medication I was on I fell pregnant easy. With my first pregnancy it made my Crohn’s go into remission, I felt amazing, for the first time in a long time, I had no problems. I had a c-section at 39 weeks and I had a beautiful baby girl called Autumn weighing 6 lb. 15 oz. With my second pregnancy with Felicity I had a flare-up at about 32 weeks and Felicity stopped growing, so at 35 weeks they decided to get her out. They gave me steroid injections to bring on her lungs, I had a c-section and she came out weighing 5 lbs., she was taken to intensive care and put on a breathing machine, there we a few complications but my baby girl was so strong and we were allowed to go home in two weeks. Felicity is now two years old and doing just fine and both are very healthy. I experienced a twisted bowel whilst pregnant with her, they operated on my bowel when they did the c-section. I don’t work I’m a stay at home mum my husband supports us. Throughout both my pregnancies I was looked after so well I was monitored amazingly. They did a scan every two weeks when I was carrying both of my girls. I could not fault the hospital one bit I was looked after ever so well. I feel so lucky to have had my children after all the treatment and medication. What my Crohn’s has put me through, I thought there was going to be a chance I wouldn’t be able to have children especially being on methotrexate but I believe in miracles and two of them happened to me. The advice I would give to someone who wants to have a child with an ostomy is to go ahead and do it and stay positive and make sure you are monitored very closely. It’s ok to carry a baby with an ostomy don’t be scared!

10 – ERIN via INSTAGRAM / USA @neonerinn

Neonerrin_Fotor

I got pregnant the summer of 2015 after months of getting approvals from my doctors. I was 23 at the time. I got an ileostomy because of ulcerative colitis. Just had my five-year anniversary! For me, I still had my rectum and I got pregnant the first try. Extremely lucky to say the least. After all the medications I was on my doctors kept telling me it could take years to get pregnant. I had my ostomy just over 6 months before I got pregnant. Luckily, I didn’t have to take any medications while I was pregnant which made things go so much smoother. I didn’t have complications with hernias beforehand but during pregnancy I got two hernias and a serious intestinal infection which made me have to go into emergency surgery. Other than the normal pain my hernias were the only other complication which did lead to a premature birth. My son was born at 28 weeks’ gestation. My ostomy did change. Mostly it prolapsed some and I did need less convex as my pregnancy went on. It was pretty normal and standard. I was lucky and did not work during my pregnancy which made it a lot easier for me to focus on my health and baby’s wellbeing. My pregnancy was really tough, but hernias and having other auto immune diseases made things harder to get through it. Mostly my arthritis made more complications and same with my rectum which at the time I still had. Me and my husband want to have another baby but are making sure my health is very stable and my weight is better before we try again, if we do. We are extremely lucky to have made it through everything and wouldn’t want to put my life at risk. Lots of factors and right now we are really happy with our perfect baby boy. It took a long time to recover because I had emergency surgery that left me with a scar from chest bone to pelvic bone and a moved stoma. It was a lot to recover from physically but having a baby in the Nicu for two months made mental recovery slow and painful to say the least. Nicu stays are the worst. My baby struggled for a while and has had some complications from birth (brain bleed from the traumatic birth, hydrocephalus from the brain bleed and he was diagnosed with left sided cerebral palsy at two years old) other than that he’s a smart and healthy boy who is absolutely perfect. If I was to give another ostomy mom advice I would say that honestly, it’s very hard but make sure you are constantly getting checked with any pain or problems and be that annoying patient. When it comes to your child make sure you are being the healthiest you can be and do everything you can to prevent complications. Do your research! Talk with all your doctors. My situation was rare, but it still can happen to anyone. Keep your head up! What’s meant to be will be.

11 – NICOLE via INSTAGRAM / CANADA @nicollefilion

Nicolle

I got pregnant in July 2018 and I was turning 28 then. I had chronic ulcerative colitis and I had surgery on May 25th 2018, for an ileostomy I choose to do 3 surgeries. So, I had my ostomy 3 months before getting pregnant. As soon as my surgeon gave me the “go ahead” we started trying. I had no trouble getting pregnant. This time around I did not take any medications but with my first son before I had the bag I was on Entyvio. I had a pretty easy pregnancy until I was 37 weeks. I then got a bowl obstruction for which I was then put in the hospital with NG tubes and a liquid diet until the induced me at 38 weeks. I wanted to do natural again (I did with my first) but the doctors thought because I had a bowl obstruction I would not have a lot of energy to push so I had an epidural I lost a lot of blood during delivery – 6 liters – but once all was done I recovered fast and my bowls started working again 15 mins after he was out (it was so embarrassing because my bag was passing so much gas.) I normally use a 1-piece, but when my belly started stretching I had to get a two-piece from Coloplast. I had way more leaks and my stoma would grow and then shrink a lot. I worked until 8 months and I would work 40 hours a week – I was a retail manager so always on my feet. Would I do it again? 100% I was lucky enough two have two amazing pregnancies and quick labors, I only had one little bump in the road which I think is pretty great. Advice? I would tell women not to be doubtful, it does not change you one bit, I think its extremely powerful that we can still grow a baby even when we have a massive organ missing from our body.

12 – CHARLOTTE via INSTAGRAM / UK @bilbo_baggins_x

Bilbo_Fotor

I got pregnant in April 2019 when I was 27 years old. I have Ulcerative Colitis and currently live with a dysfunctional J-Pouch and an ileostomy. I was also diagnosed with endometriosis at 24 which unfortunately hadn’t been diagnosed when I was younger as the symptoms were put down to Ulcerative Colitis. I have had 9 abdominal surgeries for my Ulcerative Colitis and Endometriosis and due to the scar tissue (adhesions) one of my tubes was completely blocked along with stage four endometriosis. I was eventually told I would only conceive with the help of IVF. Before getting pregnant I had my ostomy for 6 years during which I had two hernias which were also completely repaired before the pregnancy. I had a pouchitis flare up throughout my third trimester which was probably the worst flare that I have had since having my first surgery. Medication wise I was put on Budesonide oral and rectal, clipper steroid, Mesalazine and Metrodezanole antibiotics to control my flare. My ostomy was well behaved throughout my pregnancy thankfully and fortunately I was able to continue to use the same ostomy bags as I had used before pregnancy. I worked 40 hours a week throughout my pregnancy and went on maternity leave at 35 weeks however I did have to have over a month off of work to rest due to the severity of the flare up. I was booked for a planned c section on Monday 13th January due to multiple complications related to endometriosis and my J-pouch. The obstetrician did not want me to go into labor and therefore felt that it was safer to deliver my baby at 38 weeks. I recovered well after my  c -section, after having so many surgeries I knew what to expect to some extent and also knew that I had a little person who needed looking after and therefore didn’t and haven’t had much time to think about myself. Baby and I were both kept in and monitored for 48 hours and we were released the day after the c-section. I was very anxious throughout my pregnancy due to the nature of my illnesses and due to the fact that I had conceived naturally by a miraculous chance. The thought of taking medications such as steroids scared me for the sake of the health of my baby but fortunately with the correct advice and guidance from consultant specialists I knew that everything would be ok and it was I have a beautiful healthy baby girl. I honestly couldn’t believe how well behaved my ostomy was throughout my pregnancy as I was initially very worried that it would cause me problems due to my body changing shape. I was however fortunate enough to have a very small bump and didn’t look pregnant until I was due to have my section and often joked that my baby had a lot of room inside due to the lack of my large intestine. I would say to anyone thinking about pregnancy with an ostomy speak with your GP, IBD nurse, Stoma Nurse or Gastro specialist and discuss any concerns especially if you are on certain medication to ensure you are in a safe position to try and conceive.

13 – REBEKAH via INSTAGRAM / UK @thebaglifeofbeck

Becky_Fotor

I got pregnant in February 2015 and I was 25. I was diagnosed with Ulcerative Colitis and I currently have a permanent Ileostomy however, at the time I had a temporary ileostomy. I’m not entirely sure if this is related to the illness and bag however, it did take around 3 years for me to fall pregnant. I had the ostomy for 4 years before I fell pregnant. During pregnancy, I didn’t take any medication, the nurses were not entirely sure what was good for me to take during the pregnancy so we avoided any meds to treat any ongoing issues (which I was ok about as my symptoms weren’t very bad). Luckily, I didn’t have any issues with my ostomy prior to being pregnant. But during pregnancy I suffered severely with prolapsing. I wasn’t very big at all I had a very small bump however, the first time I prolapsed I was terrified. My fiancé was playing rugby and I felt a horrendous pulling sensation and my bag had bulged so I went to the toilet. I was horrified when I saw my stoma completely fill my bag. This was ongoing throughout he pregnancy and luckily whenever I lay down it went back in, but it made day to day life very challenging. My Ileostomy didn’t really change as such, it protruded slightly but I didn’t change bags, I wore a support belt to help with the prolapsing but all in all my stoma was very average for me during pregnancy.

I worked full time during my pregnancy even during the prolapsing. I worked 42.5 Hour weeks up until week 37 and I had my little boy at week 38 via planned c-section. This was mainly due to the prolapsing and the pressure behind me stoma, I was extremely scared and nervous for a natural birth and my nurse and surgeon agreed that a section would be a sensible birth plan. My surgeon was fab and she was available during the whole birth in case they “nicked” anything they shouldn’t do. I recovered very well, I think that having abdominal surgery before worked in my favor for my recovery. I was up and about immediately and managed stairs and moving around with ease (we lived in a second floor flat at the time) I was very pleased with my recovery and my baby was a picture of health. I definitely would get pregnant again, I developed pyoderma and prolapsed during pregnancy but these are very rare (so I’ve been told). I’ve had a complete proctetomy now and my pyoderma has healed up so I would be very excited to become pregnant again when the time is right. Advise for other women? I would just say to them to not fear the unknown, everybody’s experience is different and not one pregnancy is the same. It’s the most wonderful experience carrying a child and regardless of my complications I would 100% have another child even if I were to experience them all over again it wouldn’t stop me. My ileostomy didn’t stop me from enjoying the experience and once I knew what the prolapses were and that my baby was not in danger it just became a part of my everyday life and I adapted.

Ein Kommentar zu „SCHWANGER MIT STOMA – ZWEITE SAMMLUNG (PREGNANT WITH AN OSTOMY – SECOND COLLECTION)

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