Seeking Advice: Dealing with Crohn's ileostomy pain

Mar 23, 2012 2:17 am

I am angry, embarrassed, and I don't understand.
Whenever I have been to see my GI doc, who I have seen since 1988, and love him dearly, I'm asked how I'm doing, number of poop runs per day, eating, you all know the routine. I have always answered very honestly. When I'm asked about "any problems you have?", I tell him yes, I have stomach cramps, chills, a squeaky sound on my right lower quadrant after I eat. I cuddle up with my pal the heating pad and a cup of hot tea until I fall asleep or the pain subsides. The doc's answer is always about the same, "you shouldn't be hurting". He'll do an exam (dilate) and press around on my tummy and tell me everything feels in working order. First of all, there are times when I'm at the docs that I'm not in pain and I'm not going to lie when asked. Secondly, when I insist I'm experiencing pain at times, the first thing they always want to do is scope me through the ostomy then do an upper GI (barium swallow). I'm so sick of that. They always see a stricture but tell me they'll keep an eye on it, to call them if I have problems. I DO HAVE PROBLEMS.....PAIN! This doc I see is at Bethesda Naval Hospital (husband is retired Marine) and Dr. Roy retires in Aug 2012. I called him the other day to get a new script for my Humira and he's sending me to an IBD Clinic they just opened in the office across the hall. I know so many ostomates experiencing pain who get the proper attention they need with pain meds, even some people who abuse it, and here I am having to bite the bullet. Anyone else run into this problem and were you able to get the situation resolved? Please advise!
Skidder (got my nickname from laying my Harley down and skidding 30 yds up the highway!!)

Mar 23, 2012 2:37 pm

Hi... just a thought... have you ruled out any gallbladder complications... might be some association... Scotiaman

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Mar 23, 2012 6:48 pm

Hey Skidder.... I SOOOOooOOOoooooo totally know what you are talking about!! I have lived with those issues for well over 30 years on and off and had various doctors react the same way, and the same 'ol tests and such..... :/ ..... (hug) ..... but of course Scotiaman does make a point, good to maybe see a urologist and a few other expert opinions, sometimes symptoms of other problems can be the issue.... let us know how you're doing xo

Mar 23, 2012 11:03 pm

I had an upper GI and a lower (scope through ostomy), and an ultrasound in Oct 2011. They did see small gallstones but again, I was told "we'll keep an eye on it".
I really do think it's a stricture and I know it's not closed enough to require surgery, but I wish sometimes when I get cramps etc, that Dr. Wong could prescribe something a little stronger than ibuprofen. I'd rather just curl up in a fetal position with my heating pad!
Thank you guys for your input...........

Mar 25, 2012 8:27 pm

I can relate to you completely. I have severe chronic Crohn's disease and I did have my transverse colon removed many years ago. I formed a stricture at the area of resection which my GI would use a balloon to enlarge the area a couple times a year which helped but there was always chronic pain. Three years ago I formed a fistula the size of a baseball at the site of the surgery which obviously had to be removed along with my large intestine because it was so diseased. I had to be on so much pain medicine before my surgery which was sad but it was better to take it than to be in such pain. Since my surgery I refuse to take any pain medicine of any sort even though I have had three more surgeries since.
We live close to each other, I live in the Kentlands and I've been going to my GI Dr. Robert Eisdorfer for almost 18 years now located in Rockville and I wouldn't see anyone else and I have been to many hospitals all over the country and seen many GI's but Dr. E is the best.
I have been to Walter Reed hospital so many times taking my boyfriend who is a retired Commander Pilot in the Coast Guard. The facility is beautiful and I'm sure they have remarkable doctors but I always find it best to get second or third opinions.
I had my surgery done at Georgetown hospital by Dr. Evans who is the head of surgery. That is the best hospital I have ever been to! I have had many problems with my ileostomy since my surgery and I see Dr. Katz who is a colorectal surgeon at Shady Grove Hospital, he and his nurse Linda are incredible. However, other than seeing Dr. Katz I would never go to Shady Grove Hospital ever, it is the worst facility I have ever been to with gross negligence, but don't let that deter you from seeing Dr. Katz.
When I'm in pain I do breathing exercises, yoga and I'm trying acupuncture with an incredible woman that is so knowledgeable.
I'd be more than happy to pass on any info to you and all I can say is Dr. Eisdorfer is so kind, smart, caring and he and his practice have been voted top doctors in the Washingtonian Magazine many years in a row. If I have a problem Dr. E sees me immediately, he put me on two drug studies at NIH, he keeps up with every study, every medicine available and I couldn't recommend him more. Humira didn't work for me but Remicade did help but eventually I became immune to the drug, I also tried Cimzia but I had horrific side effects from it so stopped it immediately. Remicade is a good drug and Dr. Eisdorger has a room in his facility where they will do the infusions so you don't have to go to the hospital and you don't have to wait for hours for them to mix the drug.
I know the only way to fix a stricture besides trying to balloon it is surgically removing it, however there's a high chance for you to form a new stricture again. I know it's tough but I also know I'm in good hands.
If I can help you let me know and I hope this info has been helpful to you,
Santabell (born on Christmas day hence the name)

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Mar 26, 2012 12:48 am

Before my surgery, I had constant pain and told my GI doctor about it, but he didn't seem to want to do anything about it. I went to my family doctor and told him that I was in constant pain, and he knew about my Crohn's and that my GI doctor did not want to be the one to manage my pain. My family doctor was more than happy to get me the pain pills that I needed to function. This may be something you could look into; the worst thing that they could tell you is no!

Mar 26, 2012 3:39 am

I just wrote a note thanking you all for the words of wisdom. Thank you. I think I hit preview instead of submit and 'blank she went'!
I have docs here in the town I live in, a GP and a GI doc I see if I have something that needs attention immediately. If she can't remedy the situation, she sends me to Walter Reed. Now since Walter Reed has closed its doors, I go to Bethesda, that's about 80-85 miles away.
I'm just really tired of being poked on, probed, scanned, and being looked at like I have no idea what's going on with my own body. I've had this 'treat' since 1971...I DO know something! I see my GP tomorrow and dammit, I'm gonna tell it like it is! Stay tuned!

Mar 27, 2012 4:15 pm

Well, went to my family practitioner on Mon., the doc in my town. I do have an appointment at Bethesda Naval Hospital towards the end of June. The doc here told me that she could prescribe me something to help with the pain, but she didn't want to get in the middle of the docs in Bethesda if they didn't want to prescribe me pain meds. She was quite surprised that they 1) "didn't think I should be in pain and 2) "were just going to keep an eye on things". I did tell her about being sick and tired of being probed and prodded, scanned, etc. She understood that too. Sometimes I wish that these docs could have Crohn's, IBD, etc. just for a week and see how PLEASANT depression, bathroom planning, eating habits before traveling, being self-conscious in certain attire, pain, poop accidents---everything that accompanies this disease. What would their recourse be then? Is it what it is?

Apr 08, 2012 8:42 pm

Hi Skidder, I am shocked that the only med they give you for pain is ibuprofen! I know we all have differences in our anatomy, different kinds of post-surgical complications, etc. But ongoing bouts of pain as you describe is not okay. From my personal experience, I wonder if you are having partial obstructions, or just gut spasms. I have Bentyl and Morphine pills at home. If that doesn't work, I'm off to the hospital emergency room for IV morphine.

Best wishes,

Apr 09, 2012 6:07 pm

Hi Gypsy, Skidder here. Thank you for your kind words. I was told last year, in the fall, when I was scoped last, that I had a stricture on my right side, (ostomy on left). I get the typical gurgling, sometimes I see a little knot move and I get the cramping. I only have 3 feet of small intestine left, all my large intestine was removed in 1979 with the total colectomy. Ibu's just don't fully address the problem. My doc I know wants to avoid any more surgery as I might be looking at a feeding tube and I certainly do also but I just want to be comfortable. The doc stated in the fall that "the stricture is there but it shouldn't be causing you any pain". He also stated that "we'll keep an eye on it"! So I have grown to love my heating pad being curled up in a fetal position!!!