Posted 11/17/2012 1:20 PM (GMT 0)
MaxMilian - it is always a mystery to me as to whether I had UP or IBD before my first pregnancy. I had terrible upper GI problems when I was a kid - the kind of burning painful belly issues that DRs always attributed to "nerves." I am 50 years old - 40 years ago there were no MRIs or CT scans with contrast or fecal calprotectin tests. Back then no one knew about h. pylori. I got the typical advice to "worry less" so eventually I stopped complaining about it. Usually these attacks would come with diarrhea, sometimes with vomiting, but they were always transient.
In college I remember being privately pleased that sometimes I would just have zero appetite. It would appear randomly, last a few days, and then I'd be fine. I continued to have stomach issues around high stress times like finals. My menstrual cycles were somewhat irregular but couldn't be linked to my stomach issues. I occasionally passed mucous with bowel movements but never blood.
In my early 30s I had trouble getting pregnant. My ovarian function was underwhelming and it took a lot of time, effort and $$$ for us to conceive our first daughter. I had pelvic pain that my reproductive doctors could not explain during our years of trying to conceive - I now believe that this was inflammation in the bowel, but there were no other symptoms. During pregnancy I had morning sickness and food aversions, becoming terribly lactose intolerant, and delivered my 1st daughter full term. Six weeks after her birth I started passing blood with my bowel movements. I didn't say anything because 1) I was horrified, 2) there's a lot going on when you deliver a baby vaginally and I thought maybe it was hemmies, 3) I was very busy learning how to be a mom.
I let that go on for a few months before telling DH. Then I worked my way through the healthcare system and had my first GI appt when DD was 5 months old. At that point I was passing mucous and blood and having diarrhea about twice a day. I had never gotten over my food aversions from pregnancy. I was belching and passing gas like diesel truck. This [idiotic] GI told me I had IBS. I pushed him on the blood and mucous issue but he waved it off. I hadn't lost significant weight, I wasn't anemic, I was nursing a baby and feeling good besides the bowel stuff.
DH and I wanted to get right back into trying to conceive so when DD was 13 months I weaned her and we went back to our IVF clinic. I don't remember much about my bowels from this time because I was focused on the IVF cycle stuff. Sometime around when DD#1 was 15 months old I finally had my flex sig and the [idiot] GI prescribed me proctofoam. I got pregnant again when DD #1 was 18 months old and within weeks I could not eat without vomiting. Since this is typical for some women in pregnancy it didn't occur to me to tell my GI, plus I didn't like him. I think I stopped using the proctofoam because I stopped passing blood and mucous when I got pregnant. My "morning sickness" lasted until the 19th week of my 2nd pregnancy and then I was fine.
I should note here that in both pregnancies I had difficult asthma flares and ended up on a 5-day pred burst. I do not recall any bloody BMs during my 2nd pregnancy.
After the birth of my 2nd daughter my bowel function went downhill pretty fast, but this time I knew I had an IBD and I found a new GI. As I said before, because I was nursing he didn't want to do any diagnostics that involved contrast or bowel prep. He prescribed me 2g of oral Asacol and rectal mesalamine. And that helped some.
In early 2004 I got Fifth Disease, which is a mild viral illness for children but a nasty virus for adults that often causes reactive arthritis. All of the joints on my body swelled up, and I ended up on 2 weeks of prednisone to help. I got better. I think it was this year when I had my highest CRP at my annual physical - it was a 4, and taken while I was having pretty frequent diarrhea and also seasonal allergies.
The biggest issues arose around fall 2005, when DD#2 was 3.5. Hurricane Rita came to town. We "evacuated" to my brother's wedding and some ****** at the airport stole the cosmetics kit out of my checked baggage. In that kit was my night guard, a dental device that I had been wearing since 1984. Without it my jaw started hurting and by the time I replaced it 3 weeks later using my jaw was terribly painful. Soon after this I started having joint pain in my shoulders, elbows, knees and feet. Then my hands. I had to stop jogging because my jaw hurt too much with every step. I went to see a rheumatologist.
I had already had that momentous 1st colonoscopy and my GI had doubled my Asacol and pushed me to up the frequency on the Rowasa. The rheumatologist did an incredibly detailed history and took many, many blood samples. A couple of weeks later at our follow-up he told me I did not have rheumatoid arthritis or lupus but that the joint pain was strictly a result of my IBD and that my GI HAD to get more aggressive. The rheumatologist put me on prednisone, starting at 60 mg/day and it took me 3 months to get off. My joints felt a lot better but I continue to have random pain in my hands and wrists. The prednisone had done wonderful things for my IBD but after I weaned off it slowly returned to what it was before - occasional diarrhea, bloody mucous, indigestion, etc.
All through this time my GP had been tracking my blood iron. It was always low. My periods were heavy since my early 20s and that's what we always attributed this too, but it had stayed low even while I was nursing my girls and not menstruating. She wanted my GI to do another scope to see if I had any ulcers. Thus I had a 2nd scope and we found ulcers on the TI. At this point we switched from Asacol to Pentasa and voila! My diarrhea stopped. I still had occasional blood and mucous in my stool, but I kept up with the enemas and eventually that stopped too.
I had never lost a lot of weight, all through this time. My biggest issues were fatigue and anemia and joint pain. I stayed lactose-free and managed to eat alright, but still had indigestion pretty frequently. I was already taking ppis because of the esophageal stricture we dealt with between the two colonoscopies but I had frequent heartburn even while using Nexium. My OB/Gyn started to get on my case about taking calcium and iron, but I really couldn't tolerate those very well. My OB/Gyn and GP started talking to me about vitamin D.
At some point my GP suggested that I change GIs again. She wasn't pleased with the passive attitude my 2nd GI was taking with my illness. She suggested someone new, and he of course wanted a scope. So I had my 3rd scope, where we found that I still had UP, still had inflammation in the TI, still had gastritis and inflammation in the duodenum. He got me back on my mesalamine enemas. He talked to me about how to make sure I got the full dose of my oral meds.
I still complained of joint pain and one day I showed up at my GI visit with a bright red swelling on my wrist. My rheumy had been pushing him to deal with this, and this visit inspired him to put me on Entocort for 3 months, with a concurrent introduction of sulfazine. The Entocort resolved a lot of things for me - it helped my joint pain and really helped my GI symptoms. I weaned off successfully, and the sulfazine seemed to really do the trick for my joint pain. Off the Entocort my bowel symptoms got a bit worse but not too bad. This was around 2008.
For the next couple of years I complained about urgency and soft stool, but I had no blood or mucous or diarrhea. I had started taking vitamin D. I was feeling pretty good but my blood iron remained annoyingly low. I lost all of my iron stores and had to go on a pretty high dose of oral iron.
This is getting long, I'm sorry.
All throughout these years I had also been trying to chase down why I had such bad pain in my SI. My rheumy had been working on this with a variety of theories - ankylosing spondylitis and enteritis arthritis were his main ideas. I also developed some upper GI pain that was new to me - in the upper right quadrant it didn't seem to be related to anything I ate, but it was annoying. My bowel motility also seemed to change, where I had more days of no bowel movement and then some days of multiple bms with soft stool. My GI and rheumy together made several imaging studies of my pelvis and abdomen, and ran numerous blood studies. No inflammation appeared on any of these. I had a gallbladder study done, which showed that my gallbladder function was at the low end of normal, but still normal. it was around this time that I found this forum and started learning even more about IBD.
My GI started talking to me about IBS, and about gluten intolerance. He did not want to move me off the mesalamines absent any evidence of active inflammation. My rheumy had already ruled out celiac disease, but there was good anecdotal evidence from my life that eliminating gluten would be an interesting test (my sister is gluten free and as an observant Jew I had experience 8 days of no grain every year on Passover, when I mysteriously felt better). So last May I bit the bullet and committed to a 3 week trial of a gluten free diet.
The improvement I experienced first was cognitive, which really surprised me. about 10 days into the diet I could suddenly concentrate with much more intensity! A few days after that the improvement in my bowel function was also obvious. No more soft stool, no more urgency. Three months later there was no more upper GI problems. My iron is stable. I mentioned in my earlier post about having to stop take Pentasa because of tinnitus. I'm not lactose intolerant anymore. I can eat beans prepared by anyone. I feel kind of ridiculous being in this position because I was very scornful of people who touted a gluten free diet. When I have gluten by accident or by intention I have crampy bowels and joint pain.
This issue of being gluten intolerant is something I suggest frequently here, but if you haven't noticed any improvement just move on. It was important to me, but not everyone will develop an intolerance to gluten, that is obvious. I never tried any other dietary solution, but I've always been a healthy eater. I will say that over the years I evolved to a lower residue diet than before my diagnosis - fewer raw veggies and fruits, more animal proteins. This past year I've started eating more salads and it seems to be fine.
So no, I really haven't found any ways to manage symptoms when flaring except the normal ones (B.R.A.T. mainly) and getting lots of rest. I tend to listen pretty closely to my body and eat what pleases me. It is weird that my disease activity has been kind of sporadic. It frustrated me that I never had massive weight loss (because my DRs didn't seem to get worked up about getting me better). I believe my infertility is related my IBD in that they both seem to be autoimmune issues. My reproductive hormones started showing abnormalities when I was 32 but I still hit menopause at the average age (50), so "early menopause" doesn't make sense in my case. I continued to stay physically active as my illness permitted and only felt bad enough to lay down (LOL) a handful of times in the past decade. I generally underplay my symptoms in my life and it frustrates my DH but that's just how I am.
I struggled to define remission for many years because I was feeling pretty good and really not struggling with much, but it's only since my gluten free discoveries that I believe I have achieved a true remission. I really have no symptoms at all. I am still struggling a bit with motility issues but I think those will resolve as I continue to remain free of inflammation.