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My sick life...

Hi all, new to this forum. 53 y.o male. I have had GI issues for over 20 years, been a constant battle. I now am at the point of being really scared. My Dr's all suck, although they have given me test after test, I have been given no meds other than Cipro/Flagyl during flairs. They just want to re-section me. They say I have Crohn's and inflammation. I have tried diets, supplements, DC's, everything, nothing helps long term. The last 2 years have been very bad. I have had 2 scopes along with 2 CT's all confirm small and large intestine inflamed along with Diverticulitis due to my constant constipation. When I first had gut issues I had D all the time, about 2 years ago it changed to C all the time. I cant tolerate fiber, horrible gas pains. The last 2 years I have dropped from 155lbs to as low as 120lbs, right now at 130. I look like a concentration camp survivor or someone with cachexia. I can only work approx 20-30 hrs a week due to my illness, luckily my boss is understanding and we have been slow the last few years. I am a single Dad, 2 kids 15 & 16. I really need to make it few more years for my kids. I am leery of surgery because I dont feel my Dr's have even really tried all the options available. In fact over the years I have been diagnosed with the following...bad Pancreas(high enzymes), bad Galbladder(bile backing up), IBS, IBD, Crohn's, parasties, and maybe a few I have forgot. I dont think the Docs really have a clue but now they want to remove 15 inches of large colon along with my gallbladder and maybe my appendix too. Im so afraid of having this done, then being just as ill or it all returning soon. I need to try some Meds. If anyone has any suggestions on which drug is working best these days, please reply. I am seeing my GI Dr in a few days to ask for meds. I have a appt for a 2nd opinion on the surgery in 1 month, hoping some med will save me from the knife before then. When I was told 1 year ago to have the resection, the surgeon wanted to wait till a gained some weight as she wasnt sure I would tolerate the surgery in my condition, she mention I would probably lose 10-15lbs just from recuperating from the surgery. At my current weight, I still dont feel I can afford to lose any more without problems. My latest attacks, 2 in the last 60 days, have been way more painful. So painful I almost pass out at times. Any advise or recommendations would be appreciated. My thoughts are with all that are suffering this hideous disease, best wishes...and thanks so much for a site like this
 
By the way, the Cipro/Flagyl does wonders for me. Within a few days I feel great, only get D as a side effect. Others have mentioned they cant tolerate this combo but I love the stuff. After 2 wks I feel like a new person, but it all returns...
 

Honey

Moderator
Staff member
Hi there,
I can relate to you. I was diagnosed with Diverticulitis years ago and just lived with what I described to people as a bad digestive system!!! However, 3 years ago I had constant tummy pain and Dia, even just trying to eat a slice of toast for breakfast!!! I was eventually diagnosed with Crohns and went through hell with meds making me ill, even causing Pancreatitis. As a last resort, I am now having Remicade infusions in hospital every 8 weeks. It has brought the inflammatory markers in my blood down to near normal!!!!! There are still of course certain foods ,even though Crohns is not food related, which would have me running to the loo fast viz creamy or cheesy sauces. Remicade has worked for me but unfortunately I know it is a very expensive one if you are funding it yourself, not through National Health Insurance contributions we pay out of salaries each month for N.H.S. treatment. You are not having an easy time, so sorry. I am involved in every decision about my treatment as I can discuss this with my Consultant and ask questions. It took me 8 months to agree to Remicade treatment and I was on Steroids, Budesonide , until I did. Steroids only give you the feel good factor but do nothing ,or very little for Crohns. Make sure you are involved in deciding the next step, if you are not happy, say so!!! My bloods are taken at every regular visit to my Consultant. They can tell a lot from that viz the inflammatory levels. I hope all goes well for you and my info has helped a little. It is a rotten illness only those who suffer it understand. That is because it is not like any other illness, take the meds 3 times a day and you will feel fine!!!!!! The goalposts keep moving. Let me know how you are. Best wishes.
 
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