New to forum

[annattlin]

Hello everyone!

I'll try to keep my story short. I was having abdominal pain with occational D. The pain was so bad I had to take pain pills every day (which I hate). I had CT scans, barium flouroscopies, and finally had a scope done. The Dr couldn't get the scope past my cecum. I was referred to a surgeon and when they did the surgery they found a carcinoid tumor in my illeo-cecal valve. The surgery turned into a hemicolectomy because of the cancer, and they took out 29 lymph nodes, 4 of which had metastatic disease. I did well for a while, then developed a stricture. I had another surgery, (just this last October) and have had D ever since. All the biopsies from my surgery and subsequent scope I had point to Crohns. All of my blood work is normal, no sign of inflammatory disease. I'm going to finally start Entocort tomorrow (my Dr had to request a pre-authoirzation from my insurance). I'm so sick of losing weight (105 now) and having D. I'm thankfully able to work, although I have to really force myself to go, some days are better than others (like the days I don't eat lol). I take Imuran and pepcid. I took pred, but didn't do very well on it at all. Wondering if I have Crohns or if it is short bowel syndrome? I sure hope the Entocort works. I could really use some relief! oo:

 

[Crohn's 35]

:welcome: to the the forum! You have been through the wringer! Entocort is for mild to moderate cases, hopefully it can work for you. Surprised prednisone didnt help , most people hate the drug but it works like a charm for most. I have had two resections and you could have short bowel syndrome and or the diseass is active. I now have about 4 bm a day , and dont take anything for Diahreah sometimes with time it can slow down. Unsweetened applesauce and banana's slow it down somewhat. HOpe you get the relief you are looking for. What country are you in? :hang: time heals.

 

[silveyk]

Carcinoid in your ileo-cecal valve? Interesting. Usually it affects the appendix. As for Entocort...it works for mild cases. It didn't work my spouse however. My spouse usually needs the big guns like prednisone and Humira. Welcome to the forum. There are a lot of great Crohnie's here.

Dr. S (spouse of a Crohn's sufferer)

 

[ameslouise]

Hi and welcome!

Wow,you have really been thru a lot! There are so many treatments out there, hopefully you can find one that will work and control the D. Entocort is good for mild cases but it is still a steroid and should not be used long term.

I don't know anything about short bowel syndrome, but there are probably ways to combat that and slow down your system, and thicken your output.

Good luck - hope you find some relief soon!

- Amy

 

[dreamintwilight]

I'm starting to think that Entocort being used for only mild cases is not necessarily true. When I found out I possibly had Crohn's they found fistulas, abscesses, and strictures. Certainly not mild! I was in the hospital for 2 weeks on IV antibiotics and no food (to give my gut rest) before they discharged me and gave me Entocort and oral antibiotics. I was on Entocort by itself for about a month before I was officially diagnosed with Crohn's through colonoscopy and started on Humira. I didn't experience any problems in the time I was on Entocort and no other medications.

A few months later I suffered a partial obstruction and went back on Entocort to help with the inflammation until the Imuran kicked in. I felt immediate relief from the Entocort and I was only in the hospital for 3 days that time.

Not trying to be difficult, but just wanted to offer my own situation to show that Entocort doesn't just help mild cases. I do agree that it should not be used long-term and my doctor agrees with that. Both times I used it I was only on it for about a month a a half. It can give you relief in the short term, but you definitely need to be on medications that can help you in the long run like a biologic or an immunosuppressant.

I don't know much about short bowel syndrome, but it could be. I have also heard from some people who go through surgical resections that it took a while for their bowels to calm down. So, it could be that too. Are you able to tolerate milk products? If you haven't tried already, look into drinks like Ensure or Boost that have tons of vitamins and will help with the calories. Since it is liquid, it will give your gut rest too.

How long have you been on Imuran?

 

[annattlin]

Carcinoid in your ileo-cecal valve? Interesting. Usually it affects the appendix. As for Entocort...it works for mild cases. It didn't work my spouse however. My spouse usually needs the big guns like prednisone and Humira. Welcome to the forum. There are a lot of great Crohnie's here.

Dr. S (spouse of a Crohn's sufferer)

I had an appy when I was 13, so I guess it went to the next best thing left in there lol. I'm going to keep trying whatever they give me until I find something that works. I recently had balloon dialation to expand my current stricture, but the Dr tried to advance the scope into my small intestine and told me I have a 90 degree bend in my small intestine. She hinted I might need surgery again. I sure hope not!

This is great! I'm so glad I found this forum, and I really appreciate everyone's input. I did start on ensure and it does help me feel better as far as my energy level is concerned. I'll keep my hopes up for the Entocort to work and keep you all posted. Thanks everyone! It's great to know I'm not alone! :smile:

 

[annattlin]

@ Dreamintwilight...I've been on the Imuran for about 8 weeks, not quite long enough? And Pen I live in the Seattle area, the rain and cold doesn't do much for my disposition ha ha!