New - have Crohn's, strictures, frequent obstructions, waiting on first re-section

[angiemitch]

Hi everyone;
I've read plenty of entries on this site for advice, but have never registered and joined until today. My name is Angie, I'm 39 years old, and was diagnosed with Crohn's about 5 years ago. I was in total denial that I had Crohn's, as I didn't have any of the classic symptoms that I'd read about. I was mostly dealing with mild (but constant) nausea and pain, frequent bowel movements (never diahrrea), and just a general feeling of being unwell. I also had some bleeding, but I attributed that to the fissure that I had, and I figured that had happened from the frequent bm's.

After the diagnosis (via colonoscopy), I swore I could manage it on my own, and I went to a naturopathic doctor and followed a good diet, and my symptoms went away for several months, and returned for a couple of months, and then I got pregnant. And my symptoms completely disappeared for my entire pregnancy. I never felt better, I could eat anything with no repercussions. But about 3 weeks after my first baby was born, the pains came back. They felt like contractions, and they would come and go. Sometimes one every five minutes or so, sometimes one every hour, sometimes only once a day. They were very painful and felt like a burning and tightening, and only lasted about 10 seconds or so. I went for a small bowel follow through, and the doctor basically said that I had some narrowings, and that I should just watch what I ate. Honestly I can't even remember him offering me medication or anything at that point. I still had never taken anything for the Crohn's. I was prescribed Salofalk (5-ASA) after my first diagnosis, but only took it for a few weeks, and wanted to become pregnant so I stopped taking it since I wasn't having any symptoms at the time anyway.

I felt pretty annoyed at the doctor that I didn't really get any answers, so I went back to him and he ordered another colonoscopy. This time he said that the area where they had seen the Crohn's the first time (in the Terminal Illeum) was now so narrow that they couldn't get in with the camera to see it. They tried to stretch it with the balloon procedure, but if I remember correctly, it was not possible. So again I walked away from the procedure feeling like nothing had happened, and I didn't have answers. I think this was the first time I'd been given Predisone. A six-week trial, starting at 30mg, and tapering down. It helped a lot. I got pregnant again. I felt pretty good until the last several weeks, and really didn't gain any weight or get much bigger. The OB was pretty concerned about my weight, but I was feeling a lot of gut pain and having a hard time eating enough.

Within a couple of weeks of the baby being born, I started going downhill fast. This was when I knew it was more serious, and I needed to make a change. I went to my family doctor, begged for Predisone again to tide me over, and asked to be referred to a new GI doctor. I got in almost right away, and I really liked the new doctor. Only setback was that I was nursing the baby and didn't want to try any unsafe drugs for the baby. So I was restricted to the Prednisone for the time being, and it did make me feel better, especially at the highest dose (for me 30mg is the highest I've ever taken). I also tried Entocourt, but I felt that it did nothing.

The new doctor wanted all new tests, so I had an upper and lower GI, and a small bowel follow through, and bloodwork. He confirmed the Crohn's diagnosis (he actually did biopsies, the other doc didn't) and he also identified the strictures.

During the time since I had the baby, I also started having bowel obstructions. I had no idea at the time that this is what was happening, but after I described it to the doctor, he confirmed. The strictures were getting tighter and it was harder for anything to get through. Didn't even seem to matter if I was on the Predisone at the time. Those "episodes" are the worst thing I've been through. Pain, vomiting, horrible nausea, can't even get out of bed other than to puke. And it lasts for a couple of days each time. It was so hard to deal with because I'm used to doing everything at home as well as take care of two small children. I probably had at least 7-8 episodes like this last year. And I refused to go to the ER for it. Just couldn't leave my babies. I've been trying to take care of myself at home, ER visits here are so long and I couldn't even imagine sitting in a hard chair in the waiting room in between the puking ... so I stayed home and suffered through it.

The doctor tried one more batch of medications on me that he'd hoped would kick the Crohn's into remission, but it didn't work. Part of the hopes were that he could get me healthy enough to get pregnant again (I want one more child, and am turning 40 this year). Most of the biologics trials that he's doing last for over a year or more, and I just don't want to wait that long to try for another pregnancy, especially if I go off the drugs and get sick again. The drugs he was proposing to me are not safe for pregnancy. So that brings us to now ... he has recommended a re-section, and I've reluctantly agreed. I knew this would need to happen eventually, and it seems like my best bet for getting healthy and being able to have another child as quickly as possible.

I had another obstruction two days ago. I'm barely functioning today at work, and I'm having spasms every time I try to sip anything. I feel terrible, and now I cannot wait for the surgery. I'm completely med-free right now, as that's what they recommended prior to the surgery. It's booked for August 3rd. Can't come soon enough. That's my story. I'm sure I'm missing bits and pieces but I just needed to get it all out. Thanks for listening.

Angie

 

[Trysha]

Hello Angie,
Welcome to the forum .
Sorry to hear of all the suffering you have had and are having right now.
I have been through all the denial as well and never accepted the crohns diagnosis. and now at the same crossroads.Mine has to be one of the biologicals.
Sooner or later it has to be treated and for some the optimal treatment ends up being surgery.
Hope you will soon be feeling better, August seems quite a long way ahead though.
You will find lots of support on the forum and some interesting sub forums for you to visit.
Please keep in touch with us and let us know how you get on.
Hugs and best wishes
Trysha

 

[Angrybird]

Hello Angie and welcome to the forum. Sorry to see you are struggling so much at the moment One thing I was wondering is whether it would be worth speaking to your GI about going on a liquid only diet while you wait for the op, it may help ease things with the tum? I went on Modulen last year whilst I was booked for a resection and was also on no meds. It is usually a dietician that would monitor this and they will calculate the liquid intake so make sure you are still getting the calories you need.

Wishing you all the best.

AB
xx

 

[carrollco]

I am so sorry for the troubles you are having. I opted for Humira instead of surgery and am doing fine (some ups and downs, but not bad). However, I'm done with raising kids. Like Angrybird says, a liquid diet is really helpful when you have obstructions whether due to inflammation or strictures.

 

[LoriS]

I am having my first resection surgery at the end of June. After numerous attempts to manage the narrowing and strictures in my iluem. I have tried Remicade, which stopped working after almost 2 years and now I am using Cimzia and prednisone. Since I had 3 hospitalizations for obstructions in the last 5 months, surgery is the path my doctor and I have chosen.

The surgeon answered all my questions, but I want to know how painful this may be. Or how long it will take me to get back to work.

I am a law student and had to forfeit an amazing internship because of this. I quit my paying job to take this internship and now I have nothing. I hope that this will make me feel better, but right now I am sitting in my apartment dwelling on this surgery and becoming more and more angry instead of hopeful.

Any ileum resection stories and recovery information would be appreciated.

 

[jonathanzn]

I am also suffering from obstruction. Every time I tried not-liquid food I would feel narrowing here and there. After more than one month pred and pentasa, there is no effect. Now i am also taking imuran for just two weeks. I know the aza would show effect after three months or later. If aza is also not effective , maybe surgery is waiting for me.

Some of doctors I consulted said that aza is effiective for obstruction, is it true? Or it's just depends on inflammation or scarring?

 

[angiemitch]

thanks Angrybird and Louann ... I do definitely follow a liquid diet after I've had an obstruction, but as soon as I start to feel normal again, I give in to the cravings and eat stuff I probably shouldn't. I have given up completely on many foods ... most meats, cheese, raw fruits and veggies, nuts, seeds, popcorn, high-fibre anything ... and live primarily on a low-residue diet (and liquid/soft only when I'm not feeling well). Sometimes I take chances, and that's usually when this happens. I should know better, but some foods just taste so darn good! Thanks again to everyone for your responses.

 

[carrollco]

Oh yeah. I've stopped beating myself up over going off my diet. Sometimes you just can't help yourself. One thing my doc said was that obstruction caused by inflammation is reversible, once strictures develop, well, if they get bad then it's surgery. I always thought obstruction is obstruction. Once again, I'm wrong. I keep learning new things every day.

 

[angiemitch]

I agree with that Louann ... that's the situation I'm in. The Prednisone helped with the pain and may have reduced the inflammation somewhat, but the reality is that I have permanent scar tissue/strictures that are not going anywhere without surgery. If it was just inflammation from the disease, I probably wouldn't have had any obstructions while on the Prednisone. Hope that helps answer your question Jonathanzn ... because I do think it depends on whether your obstructions are happening due to strictures or due to inflammation. If it's from inflammation, I would think that the meds would help to reduce it.

But you never know, because my doctor did want me to try Methotrexate and Azathioprine, and he believed it might help me even with the strictures, but we chose not to try it, due to the limited time I have to try and have another child. Going on those meds were considered "long-term"... and to give them a fair shot, he'd want me to be on them for at least 6 months, and then go off of them at least six months before trying to get pregnant. And if they weren't effective for me, that would have been a whole year of wasted time (if not more). So maybe they could help with the obstructions regardless of the reason. Who knows, everything works so differently for each individual.

 

[retrogal]

I had a right hemi-colectomy 2 years ago done under emergency circumstances. I had let the obstruction get so bad that my bowel finally blocked. Surgery was a very scary though so, I just kept putting it off and not listening to what the dr was telling me. They removed 1/3 of my large intestine and 8" of my small intestine and was reconnected with a laproscopic procedure. My scar is 4" long! It was the best thing I could have done. There are times I wish I had done it sooner! The pain is gone, no more sitting with a heating pad pressed to me all the time. The best thing? I can (and do!) eat anything I want. 2 weeks after my surgery I was eating fresh corn on the cob...hadn't been able to do that for years and it tasted so good. True, it is not an easy surgery, I was down for 9 days in the hospital and 3 weeks at home. However, I did not get time to prep for the surgery and my body was wiped out when I went in. I had been vomiting for 3 straight days before surgery, nothing was stopping it because of the blockage. So, I was very weak. Hopefully if you have time to prepare your body can be in better condition. Now, 2 years post surgery, I am still doing fine. Have been in remission and take only maintaintence drugs Imuran and Azuldifidine. My only problem seemed to be I was having a lot of bm's due to the fact they had removed the part of the large intestine that absorbed water and I was tired all of the time. They have finally started me on VitB12 shots and they have made a big difference in my life. I actually feel "normal" again!

 

[angiemitch]

ugh, today is the first day since the latest obstruction (on the weekend) that I ate anything solid ... all I've had is a very toasted english muffin with margarine, and a few bites of applesauce, and some gatorade and a popsicle, and I'm already in pain and feeling bloated and yuck. SUCKS.

 

[David]

Hi there and welcome You've received a lot of good advice above, aren't the members here amazing?

Anyway, since it sounds like your strictures are due to scarring, the reality of the situation is that no medicine is going to change that. It sounds like surgery is going to be in your near future. We have a surgery forum here you may want to check out.

I know this is scary but so many here have had surgery and wished they did it long before.

We're here for you.

*hugs*