HealingWell
Search Close Search
☰

Been a while

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/12/2011 3:27 PM (GMT 0)
Hi everyone.

it's been a while since I posted, but I've checked in every so often.

Here's my story in a nutshell:  i've had CD for about 46 years (diagnosed at 19, but sure I had it since early childhood)  Have had 3 re-sections, 18 years apart, the last one being in 2008, at which time I also had my gallbladder removed.  Colonoscopy in 2009 showed active CD in same area (ileum).  Had been on Remicade, but had to stop due to difficulty in getting a vein.  Went on Humira, which I was on for about 2 years but stopped this past June since medicare didn't cover.  Since I went off Humira haven't noticed any difference in my symptoms so I don't think it made any difference.  Now I'm just on Entocort which I've been taking for about 4 months. 

The good thing is that I don't have much pain;  I do get bloated and gassy at times, but my main problem is the diahrrea.  I don't seem to get any relief:  have tried questran and colestid, both the packets and pills, no relief.  I have been taking lomotil but don't find it really makes a difference.  I do admit that I haven't really been watching my diet; after so many years of bland, white foods, strained baby food, and having to pass on the fruits and veges and other high roughage foods, I am enjoying eating again.  My feeling is (as ridiculous as this may seem to others) as long as I don't have any strictures at this time (as far as I know) I want to enjoy food for a while.  My main fear in the past was dealing with the blockages I experienced due to severe strictures.  I was always extra careful with my diet.

I have experimented with my diet to see if avoiding anything made my diahrrea better, but honestly I can't find any rhyme or reason to it.  I can be very careful and have a horrible day, or I can go all out, and have a better day.  My diet is healthier than it's ever been, and I have managed to gain some weight, which is very unusual for me since I'm been underweight my entire life (except at birth when I weighed 9 lbs 1 oz!)

I have some times when it seems that it's getting better and I will have some normal bms.  but my joy is very shortlived and the urgency and accidents come right back.  My GI has recommended that I see a specialist just to get another opinion.

I feel fortunate to be at a point of my CD that my main concern is the D.  I know that many of you suffer with many more issues, and I feel a little guilty complaining about this.  But after so many years of this horrible disease I'm so tired of it all.  Not trying to throw a pity party.  Just wish I could feel totally normal for a change.  The bathroom issues are really getting me down.

Anyone have any  other remedies they found helpful?  Sending e1 healing thoughts and hugs

Potty Pooper (still living up to my name!)

 

Posted 9/12/2011 4:16 PM (GMT 0)
Hey Potty Pooper nice to see you again. You need to be careful about being off of meds. You and I have similar history's and everytime I go off meds, I have ended up having to see the surgeon. Because while I was busy getting on with me life, the Crohns is still in there doing microscopic damage without me even knowing it. So please be careful, you could be setting yourself up for a world of hurt. And I hope you know that a cscope can only see so far, you could have disease in the small bowel where the scopes can't reach.

As for the diarrhea, could be something you will have to get used to, especially if the TI was removed. I myself have to stick with a low residue all the time otherwise, I will feel miserable all the time. Hugs!
Posted 9/12/2011 8:41 PM (GMT 0)
For years, I was misdiagnosed with IBS. My Internal Med doctor put me onto Alternagel or Amphogel. It is like Maalox, but contains aluminum instead of magnesium. The aluminum helps control the D when I take it unlike magnesium which causes me to have D (I can't take omeprazole because of it). If you are not taking a lot of medicines in pill form this can be very helpful, taking 2 t 3x a day between meals. However, it can interfere with pill absorption and should not be taken at the same time as your pills. I have to special order the alternagel at my pharmacy, but it is relatively inexpensive as far as Crohn's meds go.
Posted 9/13/2011 2:05 PM (GMT 0)
Thanks for the replies. Nanners - Yes, we do have similar histories. I am not planning to go medicine free; I understand the importance of being on something to keep the Chrohns from completely taking over my life. For many years I saw a GI who didn't feel I needed to be on maintenance drugs and I quickly found out what where that road would lead. I now have an excellent GI who is trying every avenue possible to keep it under control. I've taken many meds and nothing really seems to be doing the trick. The only time I did find relief was when I was on prednisone and I'm trying to avoid that for obvious reasons. I've recently went from 9mg of endocort to 6mg and i was feeling ok, but now am not doing great since my post of only a few days ago. I feel like I'm on a merry'go'round.

I'm considering making an appt' with a specialist that my dr. recommended for a second opinion. I also may ask my GI about having the camera pill done to see more closely what the story is. I know that a colonoscopy can't really see much past the beginning of the small intestines and that was the last test I had.
Posted 9/13/2011 2:17 PM (GMT 0)
sorry accidently cut my thread off.

I'm gonna try watching my diet for a few days to see if that makes a difference. Don't always find that it does, but will try again.

This disease is really a full-time job -- and the problem is, we can't retire!

Well, thanks for listening. Gonna call my granddaughters later today; they live out of town, and just hearing their voices always manages to raise my spirits.

Sending healing thoughts and Hugs to all.
Potty Pooper
✚ New Topic ✚ Reply