Inflammatory bowel disease in LTNP

[redhotmuslbear]

First, apologies for being scarce of late.  I started a new job on October 1, and between the fast pace of work and two bouts with infamy, things have been a bit crazy.

Anyway, here's the deal..... Wednesday I developed explosive diarrhea -- not on meds -- and became dehydrated.  A few hours in the emergency room produced a diagnosis of inflammatory bowel disease, though I was really hoping it was something that I had eaten.  Intestinal problems are common in my maternal grandmother's family, including a great-uncle who died from Crohn's at my current age when I was 5 years old.  So, while I was getting 3 litres of IV fluids, the ER doc said that lab work and x-rays suggested that my fabulous immune system, recovery from minor surgery two weeks ago, and work and school stress had converged on my intestines, causing them to expel everything sent their way.

I have an appointment on 12/27 with a gastroenterologist who has gazed into my colon before, in order that we can move towards a firm diagnosis.  Still, I'm interested in connecting with other HIVers with inflammatory bowel disease -- not IBS -- particularly folks who've been dealing with HIV for a long time or who might be non-progressors.

Namaste,
David

[bear60]

David
Its good to see you again.  I cant help you on this topic but I can send you a big hug and a lot of positive thoughts.

(((((((((((((((((HUGZ)))))))))))))))))))))))

[aztecan]

Hey David,

I can't help with your dliemma either, but I thought I would add a gentle hug.

Let us know what the doc says.

(((GENTLE HUG)))

Mark

[AlanBama]

Hey David

Good to see you back!   Sorry I'm not help with inflammatory bowel disease, either.....I've been told (repeatedly) that I have chronic I.B.S.

Hope you get some answers, and get back to normal...

hugs,

Alan

PS - I saw one of your two recent "15 minutes of fame" gigs on the news, not sure what the other one might be......

[Miss Philicia]

Oh, I'm sure I have IBS too if they'd give me an official diagnosis.  I've taken any where from 12-20 mg imodium each day for an entire decade, plus digestive enzymes for the past three.  There's not way to chalk all of that up to protease inhibitors.  Obviously it's also at least half simply the long term effects of HIV infection on my gut.

Good luck, David, I know all too well how unenjoyable this subject can be.  I also have a good friend that sounds as if he may have what you have, in that aside from his HIV GI woes it's compounded by something genetic in his family.  He basically takes the meds I just described in my first paragraph and then also takes a couple of other things, including tincture of opium.

[redhotmuslbear]

A little update....

Saw the GI doc 1/2 and he put me on flora supplements in case rounds of antibiotics for carpal tunnel release surgery and ear problems got to the good bugs in my gut.  He also ordered stool cultures.  Pils did nothing, and the cultures came back negative.

Yesterday on my follow-up visit he admitted leaning towards doing a full end-to-end look inside of me and a bunch of blood tests to confirm the IBD diagnosis.  He wanted to take one more crap shoot.... hehehe.... before going there, though.  So, I started Flagyl, in the event all of my aches and fatigue are not connected to my bowel distress and any culprit critters missed the screening.  He thoroughly expects me to call Friday morning, as agreed, to tell him that the Flagyl isn't working and that my pain and fatigue isn't letting up either.

To add to the fun, I reached out to an observation study at NIH regarding immune regulation in IBD.  They should go bonkers over me, and my doc would appreciate input from my LTNP researchers and others on helping me resolve this problem without getting my immune system handling of HIV out of whack.

On to the next chapter....

Cheers,
David

[1 RWR 1]

Hi David  Last Year for 6 month i could not leave the house without some kind of plan to stop somewhere. I lost 20 pounds. My Friend got on the computer and found out about the Bratt diet. I did give up all sweets.  Even now if i eat candy or cake i have to run to the bathroom.  It was hard to give up all the sweets i loved but had to.   Good luck

[1 RWR 1]

David that was Brat diet

[1 RWR 1]

David after i got better i just quit the sweets but eat alot of protein and veggies and rice.  I just did the brat diet for awhile until i got better.   After awhile i quit wanting sweets and crave meat and veggies.

[redhotmuslbear]

David after i got better i just quit the sweets but eat alot of protein and veggies and rice.  I just did the brat diet for awhile until i got better.   After awhile i quit wanting sweets and crave meat and veggies.

Did you get a firm diagnosis of your issues, though?  Sweets inducing diarrhea could be a symptom of unwelcome intestinal flora, more so than either inflammatory bowel disease (either Crohn's or ulcerative colitis) or irritable bowel syndrome (from neurotransmitters gone wild in the gut).

I saw a renowned expert on HIV and IBD, and everyone else in gastroenterology, last week at The George Washington University;  and the team examined me and looked at labs and x-rays from my 12/12 ER visit for over an hour, then disappeared for 30 minutes for a group discussion.  Based on family history, my recent surgery, my freaky immune system, and my ADHD, they believee that I have both IBD in the Crohn's form and IBS brought on by use of Stratera and Adderall.  Of course, only more labs which are in process and a colonoscopy scheduled for 3/17 will tell.

Cheers,
David

[1 RWR 1]

Thanks David .  They could not help me with the belly problems unless i started the meds.  So i kindof weened myself off sweets while starting the meds.

[1 RWR 1]

Oh Yea David which Flora supplements do You take? Thanks

[pozhealthy]

Hi. I suffered for YEARS with bowel problems. I finally think I have found the drug that is working for me. Its called Lotronex and so far its been WONDERFUL. I have one or two NORMAL bowel movements per day.  I also take a few immodium ---but i would not recommend this until you see how the Lotronex is working for you as it can leave you very constipated at times. I also eat a lot of string cheese which seems to keep me regular. Other cheeses seem to have to opposite effect. I am also taking lactaid because of a severe lactose intolerance.
Lotronex can only be prescribed by a GI doctor and there is some paperwork that must be filled out. I think it caused some really bad constipation in a few people who developed an obstruction and died. But this is rare. Considering all the side effects of the HIV meds this seem minimal to me. LOL
So seriously give it a try.
Limit spicy foods, alcohol and gassey foods like cabbage, broccoli, etc.
I hope it works as well for you as it has for me.
Thank GOD my insurance covers it.

[redhotmuslbear]

Hi. I suffered for YEARS with bowel problems. I finally think I have found the drug that is working for me. Its called Lotronex and so far its been WONDERFUL.

PH,
What precisely was the diagnosis that led to this prescription?  The complaints do not sound like an inflammatory bowel disease.

I am finally having a colonoscopy on Friday to give the GI doc a clear view of my innards and the opportunity to take biopsies.  Have a couple litres of broth ready as well as two big mixing bowls of lemon Jell-O!  Given family history and personal history, I am prepared for an IBD/Crohn's diagnosis, as complicated as it would be to treat with my remaining off meds and doing very well.  Ah, but I'm accustomed to being special.

I suspect she'll have labs done while they have venous access through an IV, so she has a timely picture of my immune system and HIV activity.

Cheers,
David

[pozhealthy]

Well i have tried all the special diets, already knew i was lactose intolerant,was tested for every parasite and other type of thing including wheat gluten,etc. etc. etc.
all the acid reducers just made me worse
spicey foods and alcohol made things worse
i tried immodium with some success.
lots of other things
this is the only thing that did
i am still scheduled for my colonoscopy--but why?, now.  this drugs has "normalized" me
so give it a try,

[redhotmuslbear]

Ugh!  I had my damned colonoscopy Friday afternoon, and the doctors said that they saw nothing that appeared pre-cancerous or indicative of Crohn's.  However, on the way from my anus to the top of my small intestine they noticed an unusual number of inflamed areas, so they took an above-average number of biopsies to see if examining the cells will givem them clues as to what's up inside me.  It could be something as "simple" as a very strong immune response to certain foods or drugs passing through, or it could be my system wigging out again following the brain surgery (which seemed to excite the gastro team like a new toy at Christmas), but it could also be yet another mystery to unravel. 

Either way, I feel that I'm in great hands, as the doc is a global expert on inflammatory bowel disease and HIV.  She was stunned to learn that I had had brain surgery just two weeks before "That little incision is the smallest damned scar on your scalp!", and she was pleased that I had hit 30 months off meds with no signs of a viral rebound or collapsing CD4s.

The only downsides of the colo-drama were taking 7 sticks to get an IV in me and having billions of cubic feet of air left in me following the procedure.  I'm a "tough prick" to begin with, and the IVs for brain surgery had shot my good veins in my hands.  Two nurses and the anesthesiologist were looking all over my arms and feet "With all of this muscle, one would expect to see veins popping out all over!"  Finally, a Gay Fillipino endoscopy nurse frustrated with the backlog I was causing (we started the scoping 90 minutes late) walked in and turned my arm around "Women don't know a man's body like I do!" to hit the huge and visible vein on the outside of my forearm.

Now that I'm getting ready to return to work, the gym, and my old life soon, this week my diet will return to heavy greens, fruits, whole grains, and lean protein.  We'll see if it makes any difference in my stool!

Cheers,
David