Looking some advice
Hi, I'm hoping some here will be able to give me some advice, kind of lost lost. I've been dealing with UC for around 10 years, I thought I had a pretty good set up, I used to get a flare up and could get it under control within 2 week with some salofalk foam. About 2 years ago I had a really bad flare and I could no longer retain the foam, it lasted about 6 months and eventually needed steroids to get under control. Since the steroids I have not had any bleeding but have not been right. I'm struggling daily with loose BM, flatulence and stomagh pains, these go on all day but are worse in the morning and I feel have destroyed my life far worse that the UC ever did. I struggle both the start and finish a BM and never feel empty. The doctors are stuck on the idea this is constipation and overflow diarrhea. I have had a stomagh xray which was clear, have moved my fibre intake up to 25-30g per day, am taking psyllium husk and am on docusate laxitives. I'm really not sure what else to do, and it's fairly obvious the doctors don't really care if there is no blood. Any help or advice, anything to try or something to say to the docs, anything would be appreciated. Thank you so much in advance.
Hi
. It is certainly understandable that no longer having your UC under control and feeling like your concerns are not being listened to would be disconcerting. Are you seeing an IBD specialist? I ask because there are a lot of different treatment options now and steroids are generally considered more of a short-term, flare treatment (see: https://inflammatoryboweldisease.net/treatment/medications/corticosteroids). Our patient Shawn wrote about seeing an IBD specialist here: https://inflammatoryboweldisease.net/living/specialist-journey. When you mention never feeling empty it sounds a little like tenesmus which our patient leader Sara wrote about here: https://inflammatoryboweldisease.net/living/tenesmus, but again, it would take a doctor to do the proper diagnostics. Hopefully others will chime in with their thoughts. Wishing you some answers and relief soon and please feel free to keep us posted on how you are doing and to ask additional questions. Best, Richard (Team Member) Hi Richard, thank you very much for your reply. I'm honestly not sure if I'm seeing an IBD specialist or not I'm in Northern Ireland, so not sure if we even have specific IBD specialists.
After I had the course of steroids (I was only on them a month) and my current symtems persisted persisted I was scoped again by my Gastrologist again and he said there was still inflamation so transfered me over to another Gastrologist with the promise that he would sort me out with biologics. This new gastro, due to me having previously detected demyelination (no symtoms) was instantly reluctant to put me on the biologics even though I had my nurologist set up to keep me monitored. He scoped me again and said there was no inflamation and is putting my current symptoms down to IBS, and refused to try the biologics. I dunno if IBS can be this bad, maybe it can, but every day I feel pretty bad without rest, every day I feel like something is really wrong.
I don't see a way forward and I'm losing the will to even go back to my current gastro. My last review was from one of his lackeys, which was a waste of time, I should have a face tonface with the man himself in a couple of months and was hoping to go with some ideas myself seeing he seems so devoid of them.
Thank you again for any advice.1. U need to become an expert on UC. Trust .gov or NIH studies - not unfounded internet crap - no pan intended.
2. Work with an IBD-specific dietitian. This is CRUCIAL. All meds come with a price & still don’t guarantee remission, short or long term.
3. Keep written records of which foods aggravate your colon & avoid them completely.
For me, it’s dairy products, animal fat, refined sugar, spicy foods.
4. It can take months or years, and great discipline, but finding a sustainable diet + right meds can be achieved.
5. DON’T GIVE UP! Keep on learning & improving & understanding your triggers. Reducing/eliminating flare-ups will turn things around & change your entire outlook on things.Hi
. Thanks for sharing your tips. I couldn't help but think of this article from our patient leader Jenna on keeping a food diary: https://inflammatoryboweldisease.net/living/food-diary. She also notes the need to work with a dietician in conjunction with it. I also want to share for everyone out there this article from Sahara echoing your thoughts titled "When you feel like giving up, don't!" https://inflammatoryboweldisease.net/living/do-not-give-up. Best, Richard (Team Member)
Have u considered moving closer to (or traveling longer) a hospital that may have better IBD experts?
Re food, everyone is different, but I would recommend sticking to fresh-only diet: nothing with chemicals, preservatives, additives, etc,
As a doctor once told me, “if it’s sitting on a shelf, don’t eat it.
Absolutely no alcohol!
I think of myself as a diabetic or an alcoholic when it comes to food: cannot take the risk, even once, of getting sick again. Therefore, I don’t lament foods I can’t eat anymore. Instead, I’m thankful for having a chance to stay healthy, for as long as it lasts.
Stay with it - don’t give up hope. The solution is probably out there, so keep on looking!
