Terminal ileum, cecum and appendix removal

[ElizabethInDallas]

I don't have Crohn's, but I've lost a lot of my intestines, so I hope I'm not imposing.

It started with an abscess that was lanced and turned into a fistula which refused to close (despite 10 attempts). Surgeon (who is no longer in practice due to reaching his maximum payout on malpractice insurance) decided it was best to give me a "temporary" loop ileostomy. He did it poorly and it immediately herniated, looping several times between layers of muscle in my abdominal wall. What he said was supposed to be "4-6 weeks, tops" lasted 4-1/2 years. I should have walked out on him, but I was pretty naive back then. I finally ended up in the ER with intestinal gangrene -- which cost me some of my colon, my cecum, appendix and terminal ileum. :ywow:

My biggest issue is that since he was in the process of being forced out of practice (thank God), he didn't inform me at all and I've been forced to hunt down little bits and pieces on the internet (Mayo, Cleveland Clinic, medical abstracts) of what the consequences of this are. Meanwhile my health is failing. I've got crappy insurance so have been researching and have a running list of things I should be supplementing (B12, K, bile salts). I've had chronic diarrhea ever since I found another surgeon to put me back together (5 years ago), but even he didn't tell me what to expect. I want to take charge of my health and am getting *very* frustrated, and admittedly a bit desperate. I just want the full story and competent doctor to guide me. :confused2:

Does anyone have a full list of what I should be taking and what the full ramifications are of the parts I've lost? I've also read that it makes your adrenals swell. I am currently suffering from Cushing's Syndrome-type symptoms and despite the diarrhea and malabsorption I have gained over 100 pounds. :eek2: I'm a health food enthusiast and don't eat junk or stuff my face. I barely have the stamina to complete a day at work, but collapse when I get home, so working out is out of the question until I have the energy to do so. The crazy thing is my sleep is shallow and virtually useless. It's an act of sheer will that I'm still working. I have no choice, so I do it... but inside it feels like I'm dying.

Do I go to a GI to get the real info, or would an endocrinologist be familiar with the effects on the adrenals? I'm tired of paying people to tell me it's in my head, or worse yet, "I dunno....". That's just not in my budget. I'm a single mom and have to get myself together!

Has anyone else who's lost these parts experienced weight gain and extreme fatigue?? My skin has changed color, the places I store fat have changed, people are making cruel comments, and if I push myself hard it wipes me out and it takes DAYS to recover.:yfaint: Climbing a flight of stairs is out of the question, much less jogging like I used to. Surely there's someone here who can relate? Does anyone in the DFW area have a GOOD doctor they can recommend?

Thanks -- and God bless.

 

[DJW]

Hi and welcome.

I'm so sorry you've had to go through this crap. I don't even know where to begin. We do have folks hear from Texas. I'm sure someone will be along soon.

Sending you my support.

 

[DustyKat]

Hi ElizabethinDallas and :welcome:

I am so very sorry to hear of all you are going through.

I am not in the US but we do have a doctor directory on the forum, this is the Texas link:

http://www.crohnsforum.com/doctor/us/tx/

…there seems to be a few docs listed from the area you are asking about.

*Bile salt malabsorption - This is not uncommon when you have the terminal ileum (TI) removed. The TI is the area that bile salts are reabsorbed back into the body before faecal matter passes into the large bowel. The problem arises when the bile salts remain in the bowel and are then dumped into the large bowel. The large bowel is normally where water is absorbed back into the body and therefore makes the stool firm. The presence of bile salts has the osmotic effect of drawing water out of the body and back into the bowel, the result? Diarrhoea.
The degree of this problem following surgery varies from person to person but should it remain a chronic problem, which it obviously has for you, there is prescribed medication you take to alleviate the problem...Questran is a powder, and Colestid is a tablet. They work by binding with the bile salts and so helping firm up the stool and reduce the amount of times you need to go each day. There is a natural alternative that works for many people, my children included. It has the same action as the prescribed meds and it is called Psyllium, Chia seeds also have a similar effect.
The other thing that you may also want to consider as a cause is SIBO (Small Intestinal Bacterial Overgrowth). This is caused by removal of the ileocaecal valve (the area between the TI and the caecum) which can result in backwash from the large bowel. It also wouldn’t hurt to rule out parasitic infection. It sounds like it may be bile salt malabsorption that you do have but again you may want to rule these other things out.

*B12 - The TI is the only area of the bowel that B12 is absorbed. Do you know how much of the TI was removed? If there was greater than 25cm removed then you will likely need supplementation for the rest of your life, usually injections. Even if you have had a lot less resected it is definitely something that should be monitored at least annually if you have normal readings.

*Vitamins and minerals - I am listing the following but this is coming from an Crohn’s background so I am not sure how they equate with your situation but likely they would be worth testing and supplementing if deficient:

• Iron Stores
• Folate
• Vit D
• Magnesium
• Zinc

*Adrenals - I can’t say that I have heard that this type of resection causes the Adrenals to swell. There are renal ramifications from the inflammation of Crohn’s and the type of resection you have had will make you more prone to kidney stones and gout. This is due to an increase of Uric acid in the blood as the TI is one area of the body where Uric acid is drawn out of the blood and into the bowel to be excreted out of the body.
Most here would have Adrenal issues related to long term and/or repeated steroid use.

*Specialists - A GI should be the one dealing with your gut issues but not your adrenal problems, that is the realm of an Endocrinologist. So you will need to see two docs.

I will tag afidz into this as I know she is the same location as you.

Good luck and welcome aboard!

Dusty. xxx

 

[afidz]

I am sorry to hear you are going through all of this, I can understand your frustration. I have gained a lot of weight because of my health issues as well, and no matter what I do, I can't control it. My GI is fantastic, he is out of the medical center of plano. I am not sure if he can help you, but if he can't he will point you in the direction of someone that can. But, I think you should be seeing a GI anyways since you have had so much of your intestines removed. Here is a link to his information: http://www.crohnsforum.com/doctor/3630/
I am going to tag 2th Fairy as well, she might have a better reference than I do