Struggling, need help with Ulcerative Colitis/Proctitis

[laughingduck]

I was diagnosed with ulcerative proctitis about a year ago. Since getting pregnant it has flared up a bit, and it feels like it may even be spreading into a full blown colitis. (For those who don't know what it is, ulcerative colitis is a form of inflammatory bowl disease that affects the large intestine. Ulcerative proctitis is a milder version that affects just the last 12 inches or so of the large intestine/rectum area. Symptoms involve diarrhea, blood and mucous, sorry if TMI!) I'm currently taking mesalamine suppositories 3 times/day, but they don't seem to be working anymore. I have been referred back to a specialist although haven't heard from him about an appointment yet. I'm just wondering if anyone else has this, and how it has affected your pregnancy? Are you taking meds?

I am really struggling because my diet is so restrictive. I am on a grain-free, dairy-free diet, and now because it's flaring I have to cut down on the fiber (mushy cooked vegetables seem to be fine). On top of it all I've developed a meat aversion, although I've been forcing myself to choke it down! I live on potatoes, some non-grain "grains" like quinoa, soups, meats (gag), and coconut milk. I am having trouble meeting my caloric needs, and am writing this at 5am because hunger wakes me up once or twice a night and I have to eat (just had a banana and sweet potato soup).

So I guess my questions for those of you who have this disease, how do you deal with it during pregnancy? I've heard it can sometimes go into remission in the second trimester, was this the case for you?

And question for non-UC sufferers, any suggestions on some high calorie grain-free/dairy-free/low fiber foods I can eat?

Thanks in advance!

 

[Honeybear1976]

Hi Laughingduck,
I'm sorry to see noone has answered you yet. I have ulcerative colitis, diagnosed May 2009 and was very very poorly for quite some time until it was finally brought under control luckily without the need for surgery though that was almost the only option. Eventually ended up on iv cyclosporin which was why I had to stop breastfeeding my last baby which made me sad but it was necessary. I am now taking azathioprine had started on dose 250mg but am now down to 100mg per day having had probs with my white cell count. I spoke to the consultant (gynae and gastro) to make sure it was ok to start trying for another baby and both said fine. The medication is fine during pregnancy but will have to stop when breastfeeding so am worried about how that will affect me. My bm's are about the same as before I got pregnant so fingers crossed it stays that way, also on all my 3 children had really bad morning sickness and I won't speak too soon but this time it seems to have left me alone! With regards to foods, I absolutely cannot eat nuts which I love! I do avoid grains and fibre too. Only thing I can suggest for you is to ask your doctor for the build up drinks, when I was younger and very underweight I was given them to help put weight on, they have all tghe nutrients, vitamins etc and they come in milkshake flavours so don't taste so bad either.
Hope some of this helps, hope you're feeling better really soon.

 

[Hammy58]

Hi laughingduck

I have mild ulcerative proctitis and am on suppositories as well. For now, everything seems to be fine but it's very early pregnancy for me. I just wanted to let you know that your not alone and that I'm thinking of you. I hope you are able to get things under control and get in with your doctor. I've also heard that sometimes women go into remission when pregnant. This happened with me a few weeks into my last pregnancy (which unfortunatley ended in mc). Since the mc I have continued to be much better than before I was pregnant with the uc. Hopefully this will happen with you as well, it's definitely a possibility.

 

[laughingduck]

Thank you so much for your replies. It is nice to know I am not alone, it can be a very scary disease, especially when you have the added worry of pregnancy! I'm doing a little better now. I think part of the reason I was feeling so bad was because I'd tried to add grains into my diet for about a week when I first found out I was pregnant, and my body did not like that at all! It started feeling like I was getting full blown ulcerative colitis which was scary. That seems to have passed an although I still have the proctitis, I can eat salads and veggies again (yay!!!) My GI also gave me enimas to try, which go up a little further than the suppositories, so hopefully that will help with the healing too. For me diet really seems to affect me. I find a grain-free and dairy free diet is so so helpful, it's just really hard to stick to! I'm discovering new non-grain "grains" that I can cook with though and is making eating a little more pleasant. I made up a recipe for grain-free buckwheat pancakes which have become my staple

Hammy do you remember what week you started clearing up in your first pregnancy? I'm so sorry to hear it ended in miscarriage

Honeybear have you ever tried giving up dairy as well as grains? My GI actually said they have found a link between dairy and UC. I've just ordered some books from amazon on healing the gut with a dairy-free specific carbohydrate diet. It seems to have helped so many people. That is great you were able to get your under control without surgery.

Good luck to you both and thanks again for the replies!

 

[kblue]

I am in my second trimester and have ulcerative colitis/proctitis.

I was diagnosed about three years ago but have only had a few flare up (one moderately serious). Because it has not been a major issue for me it never occurred to me that this would be an issue during pregnancy.

I had a flare up in my first trimester and have been on 5ASA suppositories since. They help but every time I try to wean myself off of them (against the advice of my GI specialist) the mild symptoms resume almost immediately.

I've never had to take medications for longer than a month or so and I am worried that my body is becoming dependent on the drugs to stay symptom free.

I am now on a gluten-free diet which seems to help certain symptoms (bloating, gassiness) but my hope was that it would allow me to get off the drugs. Not yet.

Now into my second trimester, it hasn't gone into remission but it hasn't gotten worse.

There seems to be so much variation in people's experience with this disease that it is hard to find information, particularly pertaining to more mild symptoms. My doctor and I don't seem to be on the same page (he really likes drugs and rejects the notion that diet may contribute) and I feel like I am on my own in terms of dealing with this. Thankfully it does not seem to be getting any worse.

I wish you all the best and would be interested to hear how things are going.

 

[laughingduck]

Hi,

I'd forgotten about this thread! I thought I should reply though since it was really hard to find good info on pregnancy and UC out there, so I will share my experience.

My UP did end up flaring into left-side UC, because I was stubborn and didn't want to take any meds while pregnant. Well, that turned out to be a bad choice, and I had a major bleed and almost lost my baby at the beginning of second trimester. When they did the ultrasound after my threatened miscarriage (which showed she was still alive, thank god) it showed how inflamed my colon was! The technician was quite shocked. I started on the meds the doctor wanted me to take right away. I started on Sulfasalazine, which made me extremely nauseous, and after about a month of throwing up I saw a different doctor who switched me to Mezavant, 1.2g 3 times/day, which was much better. I was also prescribed suppositories and enimas (which I found very difficult to take, and did not do often). I also started eating grains again, although kept off the dairy. My uc symptoms got better as second trimester progressed, but started to get a bit worse in third trimester as I got big with child and things starting pressing on my colon! Never got as bad as it was unmedicated though. I had no more bleeding from my pregnancy, although I did always measure about 3 weeks behind. She was born 5 days late and healthy at 6lbs 12oz. After my birth, the doctor showed me the placenta and asked if I had had a bleed, because half my placenta was missing! It was supposed to be round and was instead oval, he said a little more and it would have hit the umbilical cord and I would have lost her. I am so so so glad that never happened, just the thought makes me want to cry!

Since birth things flared up again, as I was told to expect. I have stayed on my meds, had to increase them a bit to 4 pills a day, and things are now starting to get better (she is 5 old months now).

The things I found extremely helpful in healing, that are safe during pregnancy, are taking fish oil and acidopholous 3 times/day, and psyllium husk in the morning. I also still don't eat dairy, and try to stay away from too much insoluble finer (soluble fiber helps though). I also tried the low finer "white foods" diet that the doc recommended and it made things much worse for me! So I eat a healthy diet and things are getting better. Oh and I find sugar often makes things much worse too.

I hear you about not wanting to take the meds, I am very much someone who would rather go a natural route and heal myself with diet, but for me I really needed the meds. I wish I had just bitten the bullet and taken them properly before things got so out of hand, mine had also started out a very mild case. My advice? Take the suppositories, keep yourself healed. I'd continue them until after you deliver, then consider weaning off of them under the supervision of your doctor. At least you are only having to take suppositories, it sounds like you are lucky in that they work well for you! Have you tried dairy-free? It really helped me. Good luck, and I hope the rest of your pregnancy goes well for you!

 

[chigirl22]

I too have crohns, it's mild and i havn't had a flare up in 9 months.. My question is .. Am i considered high risk? My first appt is in two weeks//

 

[Reedy]

I was diagnosed with Ulcerative Proctitis last year & I'm now 11 weeks pregnant x I was really worried how it would affect my pregnancy but my consultant doesnt seem too worried as long as I take my meds x
I only have to use 1 suppositry a day & I have to work out myself with trial & error as to how often I need to take them x
He has never mentioned diet to me before so is this something I need to think about? x

 

[Jeanine]

Hi ladies,

I just came across this post when doing a google search regarding being pregnant with Ulcerative Colitis. I'm currently 7 months pregnant and have been flaring ever since the pregnancy started. I have been on Canassa suppositories for the past few months but they seem to have stopped working. My doctor now wants me to take Asacol HD and I'm very hesitant to take any medication while pregnant for fear that it may cause some kind of issue or birth defect with my baby. Has any one had any experience with Asacol HD? I'm also considering trying a gluten/ dairy free diet, but I'm worried that there won't be many items for me to eat since I already know that anything high in fiber, raw, or rough bothers my stomach. I've done gluten free in the past, and it has made me feel better, but it's very hard to do while having food aversions during pregnancy, and working long hours where I cannot always plan out my meals.

Thanks,
Jeanine

 

[laylas]

Hi Jeanine!
I am currently on Pentasa (Asacol and Pentasa are both mesalamines). A little about me: between the four GI doctors I have had since diagnosis of IBD in 2009, none have ever agreed fully on if I have Crohns or UC. I believe I have UC though personally based on a number of reasons (my entire colon is affected as well-which is present in both). Either way, my disease has been classified as moderate to severe. I can tell you based on my personal experience: take the meds girl! My first baby was conceived on Imuran (azithioprine) which was horrible for me in that I always felt badly taking the drug-struggled mentally with the decision every day. She turned out perfect, thank God, but i did have some bleeding issues, premature labor issues and a placenta that when it came out the nurse asked me if I smoked three packs per day--right.
So...with this pregnancy my docs wanted me on a biologic injectable-think Humira. Ah, no thanks. Don't get me wrong-its suppose to be safe in pregnancy and thank goodness for these drugs for the women that need them. However, I personally have always tried to avoid that route as long as I can, especially starting something like that while pregnant. I took it upon myself to find the "safest" drug I could that I could take (at the time I thought I was allergic to melamine, which turns out I'm not). So I conceived on prednisone (fine for baby, bad for mom) and took it in a low dose til 15 weeks until I was eating everything in site and weaned myself off, DESPERATE to have a NATURAL pregnancy for once! i was hoping that my disease would go into remission. But...IBD doesn't care what I wanted. I flared just a few weeks later and it scared me to death. I was so afraid it would affect my baby or cause me to lose him. I decided to give Pentasa a shot. My flare improved within 48 hours! I have continued to stay on it and i have done well. Now that I am in my third trimester, I am finding that my gut seems a little pickier, however, and I really need to try to not miss doses (Pentasa is every 6 hours-ugh). Personally I am loving Pentasa after unsuccessfully being med free and after having to take Imuran during an entire pregnancy.
Onto the diet issue: before getting pregnant I was gluten and dairy free (as well as on very little sugar) after having blood allergy testing. To my great disappointment, the diet not only made me feel alone and socially isolated and BROKE financially, but my disease also did not improve. So when I went back on meds I went back to eating everything. However, I know I shouldn't eat/drink dairy as I can tell even while I am medicated that I do better without and almond milk does a great job of helping with calcium intake. Personally, there is no way I could be gluten free right now-too hard, especially when hungry and trying to take care of a toddler. But do I think gluten free and dairy free are best for most IBD patients? Totally. Mesalamine is very safe in pregnancy-I hope if you do decide to take it that you don't worry yourself about it. Its a good drug. BTW-baby is completely healthy and measuring consistently a week ahead on US. I get growth scans every 4 weeks bc of IBD. I hope something in my rambling helped

 

[JT2013]

:Hi all

I have Crohn's and I think/hope it is in remission purely due to pregnancy. I came off Humira when I found out and had a few problems in the first fIew weeks which worried me a bit but it has calmed down a lot and now I rarely have any tummy troubles...really hoping it carries on like this. My appetite is still generally as poor as ever though so I'm having to work hard to remember to eat good things - I'm trying yoghurts as snacks and fruit, but appreciate that some people find these tricky. Porridge is also very good - nutritious and easy to digest.

Also, agree with the above poster, Pentasa would have been my ideal for added reassurance, but unfortunately my GI wouldn't prescribe it to me because it never worked for me before in terms of preventing flare ups so he doesn't see why it would now!
Anyway, good luck. Sorry I can't be more helpful but looks like there are a bunch of us who are in the same situation!

 

[laylas]

Hey JT2013-feel free to message me anytime if you need any support this pregnancy. I know it is difficult to find others with IBD, let alone pregnant with IBD. So glad you are off medication for now and hopefully for the entire time

 

[SillyMoo1983]

I have UC and take Asacol and Colifoam. They really do help. I flared badly after my DD was born and those drugs helped bring it under control without having to go onto steroids again. Minimal amounts of Asacol pass through the placenta, my DD was perfect, if on the small side. I'm expecting a flare after this birth too so will double up on my Asacol if the warning signs start.

 

[Angelann]

Hi ladies,

I am trying to conceive and have been diagnosed with uc in the past. I am 31 and just got married three months ago. my husband and I really want a little one soon....

Currently taking Lialda and Canasa daily. I want to get pregnant but I am afraid. I am hoping to be on remission soon to get pregnant but I not sure how this will all go. I know that it takes a while to get pregnant. Does it take longer when you have uc?

Any advice for me?