Hello again

As to try and rule out as many things as possible i wanted to ask a few questions

1) what are the symptoms of a kink in the bowel / pouch

2) what is the treatment for it?

3) would the pain be localised? Could you pinpoint it to a small area?

Regards

I suffer from severe abdominal adhesions after Jpouch surgery 22 years ago (it didnt start until about 6 years ago).
It started by after a meal (normally evening) I would get a severe pain in my abdomen and I would just put up with it all night until I nodded off and I would wake up some hours later and it would have gone.
It got worse and as it did I used to end up in A&E who diagnosed me with anything from gall stones to liver failer to heart attack.
In the end it was blockages in my bowl from the adhesions after surgery that had slowly got worse over the years.
I now eat nothing but fish, chicken(no skin), pasta, basmati rice, chocolate, potato (no skins + cooked to mush).
The key for me is to not eat fibre and if I have to have eat food then cook it to death (so its very soft) but keep away from nuts, beans, mushrooms, etc.

The pain was like a severe cramp but also like a knife being sliced into your belly at the point of pain (usually near where the bowl has been reconnected).

I also have to take omeprozole every evening for excess stomach acid.

Hope this is of some help. Feel free to ask more questions as you see fit. Im happy to help if possible.

Hey! Thanks for the reply!

it sounds like your pain is much more severe than mine, mine is more of a dull ache type pain, but quite a debilitating dull pain, and it radiates throughout the entire abdomen and into the pelvic region. 

Randomly, i can get the pain after a night time meal say on a Tuesday, but then i went to a restaurant with my girlfriend on Thursday night and didn't experience the pain, i did have a few glasses of wine which i always do on a weekend, i'm wondering if the wine relaxes me thus pointing in the direction of it being a phsycological problem such as IPS?

Adhesion pains do sound more sharp, severe and localised compared to mine, i literally can't point to one particular problem area of the abdomen.

I have, for piece of mind, gone against my surgeons opinion and booked myself in for a pouchoscopy in 2 weeks.

The most random thing of it all is the very beginning of a gym workout getting the pains for a few mins.

thanks again

Hello again everyone!

so in the last few weeks there has been a few developments, good and bad...

i ended up booking myself in for a pouchoscopy as the symptoms had been getting slightly worse (stomach cramps more frequent) and for peace of mind.

i had the pouchoscopy Wednesday this week, and the day before i booked myself in for a full blood count at my GP to try and cover all bases. The pouchoscopy went well and they found no sign of inflammation or any problems, i was sedated and didn't get a chance to speak to my surgeon properly, but he told the nurses to tell me to start 25mg of Amitriptyline that night as he suspects Irritable Pouch Syndrome.

I took the 25mgs on Wednesday night and man, it was the worst experience on medication i have ever had! Severe drowsiness all night and all day Thursday, almost crashed my car, couldn't get my words out properly etc...

So last night i didn't take another Amitriptyline, i'm hoping that the clear diagnosis will be enough to eliviate the symptoms, i did however visit my GP today about it and he prescribed me 10mgs telling me 25mgs is too much to start off with, so i may try the 10mgs tonight.

This afternoon i got a call from my GP about my blood test, they told me it had come back abnormal and was showing that i am Anemic, they assured me it was nothing serious and not on the GP's urgent list, but asked me to come in for a further blood test to investigate, so i managed to get a slot today and they took my blood again.

So i will wait for my results, the problem being that i'm going on vacation to the Czech Republic on Wednesday so hopefully it's nothing serious or they don't need me to go back in.

I did have one question which has come about from reading a bit on the internet in the last hour - what are the chances of me having Celiac disease? I ask as it seems to be related to Anemia, and i have chronic stomach cramps, and low appetite...

I'm hoping it is just IPS and the Anemia is related to poor Iron absorbtion or something, and can anyone tell me if Celiac would show up in some way on a full blood count or indeed a Pouchoscopy?

Regards!

Celiac isn't particularly likely, IMO, and wouldn't be diagnosed with a blood count or  pouchoscopy. You could ask about it, though. Good luck! 

Hey Scott! 

Out of curiosity, what makes you think that Celiac isn't likely? (I hope you're right by the way) To clarify - my symptoms are Abdominal cramps and low appetite and nothing much else.

i do hope it is 2 seperate issues, IPS and Anemia that might have been there for years (haven't had a blood test for years)

p.s. I'm a 33 year old male

thanks again!

Lots of things can cause your symptoms in a J-poucher, RB. Celiac just isn't the most common cause. Are your stools fatty? In any case, your doc could add the appropriate blood testing for celiac. I honestly don't know if a small bowel biopsy from below would be a convenient diagnostic tool in J-pouchers. The biopsies are usually taken from above. 

I would think that Celiac would cause more consistent symptoms, but worth looking into. I suppose you could avoid wheat products while traveling to the Czech Republic. Have you considered an upper GI problem, like gastritis, peptic ulcer, etc.? That would support your symptoms and mild anemia.

Be sure to bring any and all meds you think you might need. I could not even buy decongestants or antihistamines OTC. All they offered in the pharmacy was herbals. I wound up with full blown bronchitis by the time I got home.

Jan

Hey guys, interesting points

Scott - stools are normal, this is the strange thing with whatever condition i have, a lack of concise symptoms, just the stomach pain, bloating and low appetite are there every day.

Jan - i have read into almost everything that it could be (bit of a hypochondriac) and a peptic ulcer doesn't seem to match my symptoms in that the pain from a stomach ulcer appears to be more in the upper abdomen and causes a burning sensation and acid / indigestion, where as my stomach pain is not constant, worse at night and in stressful situations, and lower down in my pouch and pelvic regions, lower back a little bit too, and definitely not a burning pain but rather a moderate aching, similar to my old UC pain.

My GF is Czech so i feel a bit more confident going there with her, i'm just at a loss at what has caused the Anemia, i will definitely ask the questions about the other conditions though!

p.s. Where do us pouchies stand on Antacids? Are we allowed to take them? Might be worth a shot to see if it is a upper GI issue!

Cheers!

Antacids and acid blockers are fine. If you use them long term watch your B12. 

Lots of upper GI issues that are not peptic ulcer. Could be hiatal hernia, mildly inflamed gallbladder to name a few. Try not to dismiss a possibility because you do not check all the symptom boxes. Many people, and particularly those of us with complicated medical histories may not fit usual criteria. This is especially true for characterization of pain, as it is very subjective. Remember, people have heart attacks with no pain at all. Also, it is quite possible to have both IPS and some other chronic upper GI disorder. It is pretty common for us to look first at the pouch as a source of issues.

Rather than seeing your surgeon, I think you probably need a good gastroenterologist at this point. In the meantime, have a relaxing time on your trip. It can certainly help with your symptoms. And like Scott said, OTC antacids for your symptoms are fine in the short term.

Jan

RB15 posted:

Hey guys, interesting points

Scott - stools are normal, this is the strange thing with whatever condition i have, a lack of concise symptoms, just the stomach pain, bloating and low appetite are there every day.

Jan - i have read into almost everything that it could be (bit of a hypochondriac) and a peptic ulcer doesn't seem to match my symptoms in that the pain from a stomach ulcer appears to be more in the upper abdomen and causes a burning sensation and acid / indigestion, where as my stomach pain is not constant, worse at night and in stressful situations, and lower down in my pouch and pelvic regions, lower back a little bit too, and definitely not a burning pain but rather a moderate aching, similar to my old UC pain.

My GF is Czech so i feel a bit more confident going there with her, i'm just at a loss at what has caused the Anemia, i will definitely ask the questions about the other conditions though!

p.s. Where do us pouchies stand on Antacids? Are we allowed to take them? Might be worth a shot to see if it is a upper GI issue!

Cheers!

Hi RB15,

I realize your post is a little old but was wondering how you are feeling and if you ever got a definitive diagnosis.

Thanks!

Hi Charles

Yes i have in fact got the condition under control, the working diagnosis is / was IPS, but what has completely ridden me of the symptoms was bizzarely a short sharp course of steroids (prednisolone)

since i was posting on here i was gradually increasing my dose of Amitriptyline but without any cessation of symptoms, i was at 60mg and started to get fed up with my quality of life. 

I booked an appointment with my surgeon and asked him if there was anything else i can try, he said that he has had success with a handful of his patients with the same symptoms but giving them a course of steroids, his reasoning was that it appears to “reset the thermostat” in the body.

Well, it worked, and i have been pain free since January this year, im down to 10mg (from 30mg)  of the steroids and will be dropping to 7.5mg in the next week or so, i’m down to 35mg of Amitriptyline, i dont want to mess too much with the latter in case i upset things.

I should also note that i have absolutely piled the weight on (in a good way) as i weighed 58kg’s this time last year, i now weigh 76kg’s and it is mainly muscle as i lift weights 5 times a week. I seem to be putting weight on every week even at 10mg of the steroids so i’m hoping i keep it on when i finally taper off it.

So if you are in the same boat - consider a course of Steroids as it might just reset whatever was out of balance in your system.

Cheers

Hi RB15,

Thanks for sharing your experience! I will start a brief course of steroids today as well as a special X-ray to check the movements in my system, ordered  by my general physician. I will also call my surgeon at Cleveland Clinic to get his view, as well.

Thanks!

Hi RB15,

Ok, so today I had my appointment with my surgeon at Cleveland Clinic to discuss my abdominal pain/discomfort and to have my  routine two year Pouchoscopy. He stated my Pouch appeared slightly red but otherwise, appeared ok. He took 16 biopsies. I mentioned to him about a possible correlation between SIBO and Pouchitis. He said he has not read anything that confirms it so that idea is still on the fence. Have you read any studies that confirms it? 

My surgeon wants me to finish the 6 day MethyLPREDNIsolone my GP prescribe. If it doesn’t help, he wants to start a course of Cipro.

What are your thoughts, base on your own personal experience?

Thanks!

Hi Charlie

All i can say is that over the years when i had the pains, i exhausted every option which included thinking it maybe pouchitis / SIBO, the relevant courses of antibiotics did nothing for me, they have done in the past though when i have had bacterial overgrowth.

it was trial and error for a long time with myself before settling on the fact it was a type of nerve pain i was experiencing, maybe from stress or anxiety. Years of Amitriptyline brought minor relief, but nothing like the course of steroids has done for me, i just hope the symptoms keep at bay when i finally taper off them.

I can only stress the importance of finding the source of the pain, only then can you and your surgeon react appropriately, but i think you and anyone reading this that may be dealing with IPS pains could really benefit from being armed with the knowledge of the slightly leftfield option of steroids as a treatment.

Let me know how you get on

Ok,

So after dealing with almost two months of abdominal pain, I decided to drive to Cleveland Clinic and discuss this with my terrific gastroenterologist.  After a thorough exam, he determined that I have pouchitis and SIBO. He prescribed Fagyl for two weeks. After only four days into treatment, I felt so much better!