Feeling down and in need of morale support

Boy have the doctors really got you snowed into believing that you are in clinical remission and all your problems are due to IBS. I would totally skip the FT idea since, according to you, that option seems awfully difficult anyway. You do have a complicated case though (IBD in my opinion, not IBS). What meds and supplements were you on before the FT's and how were they doing then (couldn't have been doing too good if you went ahead with the FT's)? I would have a stool test done tomorrow for routine if nothing else. You seem to be doing several things and I wonder if you really know if they are doing anything useful or not, such as:

Treatment:
- 1 x 7mg nicotine patch per day (planning on upping to 14mg this week end)
- 2 x sodium butyrate capsules per day
- 1 x table spoon of psyllium seed powder, twice per day
- 2 x VSL #3 sachets per day
- 2 x prescript assist probiotic capsules per day
- 1 x 25mg dothiepin capsule (TCA antidepressant)
- 2 x bee propolis capsules per day
- clean eating (ie. little to no gluten, little to no diary, mainly low-fodmap)


Do you really know for sure if any of these are actually improving your condition? Since you are making this post in the first place I wonder. Personally, I think you have boxed yourself in with believing this is IBS and not IBD. I think you need to look at this from a different perspective in order to make further progress.

MaxMilian, I understand your frustration, I'm in a very similar situation myself. I'm not 100% sure if I still have simmering inflammation causing the remaining symptoms but my GI dr sure does like to elude to the remaining symptoms as ibs???though I've never had a clean scope. I'm not sure if I buy in to the ibs thing or not. I mean, ok, these symptoms aren't like my ibd flare was... And I can see how it would be more of a functional problem since I have a couple of normal days followed by a day or two of 6-7 poops, or a day or two of diarrhea but at only once/twice a day then back to normal. I think what is most frustrating, at least for me, is how the doctors like to say"oh, it's just ibs" like, ok,not going to kill me...but you don't think I deserve to live a life better than whats possible with a colon that wants to crap 6-7 times a day, often with little warning and much pain??? If you and your doctor think its ibs that's remaining, have you tried the options for ibs treatments? Like tricyclic antidepressants, codeine, etc etc?

I see my GI in a few weeks and have been thinking over how I'm going to phrase things when I see him next. Like, ok, my 5asa's are working as far as making life bearable, but I want more. I don't want to just accept a six poop a day lifestyle, being afraid to go anywhere that toilets may be scarce. Worried that mid conversation with my boss I could have to excuse myself three times within a 15 minute period because I poop in clusters like that and each one gets more and more urgent. I'm going to very clearly explain that although I'm improved to a level that I can cope with life...it's not acceptable for him to give up and leave me in this state. I'm not sure what to expect out of this type of conversation with the dr, but I have to try. Perhaps a similar conversation between you and your dr could be useful. I sometimes think they don't "get it" and just think we're being over dramatic, or I'm just being a girl who doesn't want to have to poop in public or something stupid. No, my life is constantly on hold because I never know what my sh-!-tty bowels are going to do from one moment to the other.

Sorry, long story short...I feel your pain.

Hey Max.

I'm sorry you sound so spent, or frustrated...

I think the hardest part of these health challenges are the waxing and waning moods we deal with. There are good times, and then there are bad times. Our bodies are so strung out from the fights we go through every day that sometimes we really feel like the sky is falling in on us (it isn't).

I've been on Remicade for nearing on three years. I've been in clinical remission most of that time. Yet, for the first 9 months or so I felt like nothing had changed except that the severity of the flare had passed and I'd stopped bleeding. I still had a ton of urgency and doubt about what I was capable of.

I haven't been counting my stools for a long time, but in general I'd say I'm around 2 to 4 bm's per day. That is in general normal for me, pre-UC even. If I keep putting a bm off then it will become more urgent. However, the frequency of 2 to 4 per day is completely manageable and not something I even think about.

The summer after I began Remicade (in January) I took a seven part guided hypnosis program with a therapist for IBS. After it I still didn't feel like a lot had changed. Then I met my now wife, AND began Cymbalta. I took the IBS program from June through August, roughly. I met my wife in late October. I started took Cymbalta in November and part of December. Somewhere in there my gut habits just changed...

The Cymbalta was the most drastic difference I noticed. Oh My Gosh did it help me ease my guts. I began having 18" bm's and felt so calm with my gut. I only stopped because of the side effect of erectile dysfunction.

Something about one or all of those things changed me, and since then my gut is just calmer. I still have times when I need to make sure I don't have to go before I leave the house, but it's not like it was.

Let me tell you something about the confidence thing. It will happen. It's that simple. You have to work at your outlook and your goals, but it will happen. Once I had my gut more under control I was able to joke with women, be proud of my accomplishments, and really just put myself out there in ways that were always there... but were hidden by my struggles.

I wish I had an immediate solution for you, but I don't. I tried a million supplements and things like you're doing, and only a few really helped my UC. The IBS was more stubborn, like yours is. What seemed to work for me was something with that combination of efforts aimed directly at bettering my life.

I did a generic google search for "Cymbalta IBS" and this was one of the links: http://www.ibsgroup.org/forums/topic/130546-ibs-d-brought-under-control-after-30-years-with-cymbalta-30-mg-day/

Cymbalta is different than the TCA that you're on I believe. Even just checking it out for a bit probably won't hurt you. I was actually trying it for the body pains I have, and it didn't help for that. Had I been able to have sex while on it I would've stayed on it. Don't worry though, I'm just extra sensitive to meds in that way, more than most.

Believe me, you'll get to where you want to be with these things. It just takes a ton of patience as you trial and error through to the answers you're searching for. Good luck.

Post Edited (Thoreau) : 9/17/2014 9:24:36 PM (GMT-6)

How are you doing, MM?

Wow thank you all for your support! I feel very loved on these forums and I appreciate it from the very bottom of my heart. Thank you :)

Apologies for the slow reply. I have been reading everyone's responses but I've been very busy with work (tax season) and I've had to help my mum and sister ready for their overseas trip. Also apologies for the wall of text below, I am so grateful of your responses, I've addressed them individually.

I am doing ok. My symptoms haven't really improved, yet they haven't gotten worse (touch wood) either. Oddly the next day after writing my original post, I felt better and only had 2 BMs... strange huh?

I saw my GI on Thursday (a new GI as my original GI told me there was nothing else he could do for me seeing as my IBD was in remission and we had tried everything he knew for IBS) and he seems more open to trying 'out of the box' treatments. He does, however, want to perform a colonoscopy as he said that despite all the prior colonoscopy reports, stools tests, photos and historical descriptions of my IBD history and symptoms, he wants to have a look himself. Whilst I don't like colonoscopies, I would think his request is not unreasonable. I have asked him to possibly do one early next year because, by that time, it would be 2 years since my last full colonoscopy so it probably is appropriate to have a look inside anyway.

Gary: You are possibly right. I am not discounting that my symptoms may be more than just IBS, but from my medical journey, the symptoms I displayed whilst flaring compared to my current symptoms, my reactions to medications, what I know about my bowel habits historically and the colonoscopy/stool/blood test reports, I am managing my condition on the basis that it is IBS. Either way, as a few reports posted on these forums have posited, IBS could essentially be a microscopic version of colitis that is not visible even on biopsies. This, like wise, would possibly mean IBD treatments should alleviate my symptoms. Unfortunately, with the current IBD treatments I have tried (everything short from prednisolone or above) nothing seems to have worked.

You are right in that my symptoms definitely weren't terrific prior to initiating FMTs but they weren't as bad as they are now. To be honest, I went in doing FMTs because I was hoping it would 'cure' my IBD. From the post FMT colonoscopy report, it seems to have put the IBD in remission but has now worsened by IBS. My main issue now is gut peristalsis in that it seems to be hyperactive. When eating I can feel my lower gut 'gurgle' and, more often than not, I will need to have a BM half way through the meal or shortly after, mostly urgently. In addition I have slightly more mucus than what I would deem as normal (ie. I visibly see the mucus on the toilet paper but I don't pass mucus by itself).

Of the treatments I am currently on, I am very certain that the following helps:
- Psyllium seed powder: Seems to have significantly bulked my stools and very minutely reduce urgency. Prior to this, I would be having loose to diarrhea stools almost 5 out of 7 days. After psyllium, it was down to half that

- Sodium butyrate capsules: These seem to have further reduced my diarrhea to almost nothing. Now the worst stools I have are 1 episode of diarrhea for the week, loose/very loose stools 3-4 out of 7 days (does very from week to week). The rest are formed (unless I have eaten something that obviously disagrees with my gut). I also experienced less yellow stools after taking this. That's not to say I don't have anymore yellow stools (probably half my stools are still yellow) but it substantially reduced them from before

- Clean eating: Plain foods and avoiding gluten and diary seems to have made positive difference.

The other treatments I am still not too sure about. I think the VSL #3 with psyllium seed powder is having a synergistic effect in that it is producing further sodium butyrate, which in turn is further helping my gut.

Not Happy Yet: Thank you for the advice. I do try to get in exercise when possible and try to get in as much sleep as possible.

TMP: I am sorry that you are suffering as you are currently. It is really a pain isn't it. But I guess misery loves company and at least we both can be comforted in that you and I are not alone.

Thoreau: I really appreciate your advice. I read a lot of your posts, Thoreau, and I do follow your story with interest. I am glad that you are progressing with your life (ie. have made some wise property investments, have managed to sell your business and have a great wife). In some ways, I feel we do think very similarly (we do analyze things very carefully and like to be 'logical/systematic' in our approach to issues). You obviously have more experience in dealing with IBD than I do and because of our emotional similarities (and age similarities - I am a 28 yr old male), I do take your encouragement to heart and believe you when you say that my confidence will improve and that "you'll get to where you want to be with these things". I am very grateful that you responded to my thread and are concerned about my well being. Thank you :)

Regarding the Cymbalta, I did try 1 capsule mid last year and immediately had several episodes of diarrhea. Now that I think back, I am still not entirely sure if Cymbalta can have such a drastic response. But I haven't tried it since. I am open to trying it once more, but given the other treatments I have lined up for now, I'll probably try it next year or so.

I think it is interesting you mention it is possible that a combination of things improved your IBS. From treatments to life style changes. I envisage that given my stubborn IBS, a similar approach (ie. a multi-pronged change in lifestyle and treatment) will need to occur for IBS alleviation. As to what those changes will involve, as you mention, it is still probably a trial and error thing.

Imagardener: Thank you for your advice. I do believe in your suggestions because you've been posting for a long time and have had success in your more natural approach. I have tried the DAOs that Gary mentioned without much change. I have theorized, however, that I possibly need to try it again in combination with other treatments. Last time when I tried it, I think I was just taking the psyllium seed powder. Perhaps it is something I should revisit again.

I also note you mention trying different fiber supplements as one might work better for others. Currently I am on psyllium seed powder but I remember reading that someone on these forums had failed with psyllium seed powder but was suddenly benefiting much more with "Organic Triple Fiber" (flaxseed, oat bran and acacia). I have recently purchased a supply for myself and when the time is appropriate, I will try it and stop my psyllium seed powder.

I do take imodium and buscopan or hyoscyamine when going out or having a long meeting and they do help (for half a day I am fine). I do have pepto-bismol to use if need be and have lomotil in my disposal if absolutely necessary (though I haven't used it for a while now). I find that if I take imodium or an antispasmodic for repeated days, after the 3rd day the effects begin to reduce and I need more to achieve the same effect it had initially. If I spread out the medications, and take them once every 1.5 - 2 weeks, the effects always stay potent. Not sure if this is normal or not O_O.

NSG: Thanks for the encouragement :D. Is FT something you are considering? For me FTs actually worsened my IBS (something I definitely wasn't expecting) but I have read reports that it can improve IBS. Ultimately, I think the treatment is in its infancy and I hope my experience serves to educate others in that we shouldn't rush too quickly for treatments without fully understanding their side effects.

I would do an FT in a second. My GI gas done them before but said she hasn't seen much research supporting it for UC. I know the research is flawed because there really just isn't a lot of it but I've seen a lot of people here with good results and I don't think it could hurt in my case. I just don't have a good donor and I am pretty sure it wouldn't be something I could get covered by insurance because of the fact that it's not FDA approved for UC so I don't think it is going to happen for me unless there is some type of trial :( It sounds like you're doing pretty well overall but i Know how frustrating this is. Maybe if you did the scope a little sooner, you would be able to visualize what's going on, if anything, and make a plan.. The problem is that with IBS, I don't think there is much to see.