Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
Fistula
C Cate87
Jeffsmom Lindsey my son went through the same thing he had his first surgery in 6/14. Takedown 9/14. He had his second ostomy, a completely open surgery in 3/15. He said the second time with the ostomy not so bad. The surgery was just as bad as the first 2. Its the same thing but in reverse. Its all difficult. There really is nothing you can do. Its all hard. Im so sorry you are going through this. But depending in where and what the fistula is connected to, they dont clear up easily. Jeff's fistula... [ more ]
Lindsey R. I'm dealing with an awful fistula and can't take it anymore! My surgeon says I need to go back to temp ileo for it to heal. How bad was the surgery to reconnect the ileo? What was recovery like? The thought of another surgery scares me to death. Do you have any suggestions for things I could be doing on my own that may help? Thank you, Lindsey [ more ]
Jeffsmom This is my area! Find the fistula before takedown. I cant image a surgeon doing surgery knowing there is that possibility. Have an MRI, CT scan, go see Interventional radioligy. If there is a fistulia IR will find it. Im in a meeting right now so i cant get into it more but let me know if you need more info [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
spot bleeding from skin tag or hemorhoid?
PouchomarxPouchomarx
Pouchomarx ok, I was also on Cipro for 10 days up until 2 days ago as well, I was able to get my phone camera back there and I can see the little hemorrhoid next to the anus, its maybe a half size of pencil eraser. The thing I did notice more is my area an inch or two from the butthole outward is red. not angry red but not happy red. I am thinking maybe from all the hemrhoid cream and the Cipro maybe I have a fungal issue now?? I have Nystatin powder still from my stoma days, should I dust it on back... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Alternatives to Zoloft
DI Dear Intestines
Erik R I take 50 MG of Zoloft and 1 MG of Ativan at night. And man has my body become dependent on them. If I miss my Zoloft dose, I get these weird dizzy headaches (never got these odd type of headaches until I started taking antidepressants about five years ago) If I miss my Ativan dose, I can't fall asleep. I don't think neither seem to affect my digestive system but they sure affect other stuff. It gets frustrating taking these pills. I got this surgery so I could get off the meds (Asacol,... [ more ]
Goentropo ❤️
Lesandiego I thought Zoloft was going to rip my pouch apart after one dose. ativan (or Xanax) is my go to happy pill. Lexapro could have been one of the reasons for my serious hair loss after step one. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Abdominal Muscle Pain after 5 years with no problems
D daviwyat
Jan Dollar Well, anything that is fixed by yogurt can't be very significant! Glad you are on the mend. Maybe just some minor bacterial overgrowth. Jan [ more ]
daviwyat Thanks Not sure what was the cause but I ate Activia and other yogurts for 3 days and the pain stopped. I will be seeing the doctor next week for a regular check up. Thanks [ more ]
Jan Dollar If it is continuing, yes you need to see your doctor. This may or may not be related to your surgery. So many things this could be. Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Fistula and low iron not anemic
B bwillis77
J moons I had drains inserted and removed for 13 months (with seton bands and debridement procedures) but the fistula finally closed on its own. Ideally, getting a temporary diverting loop Ileostomy while have a drain placed would work best but I really didn't want to have the Ostomy. I still worked during all of this. I was lucky to have an interventional radiologist willing to continue working on it with me. You can PM me if you'd like to discuss further. [ more ]
bwillis77 Thanks for the response. I am hoping for no surgeries, but not feeling confident. We will see after my visit this afternoon. I am going next week to a hematologist/oncologist to see about the iron infusions. Thanks! [ more ]
min990 Hi BWillis, It's good that you've arranged to see your surgeon so he can examine you further. With regards to treatment of fistula-in-ano, theres nothing you can do except opt for surgical management with a minor procedure. The procedure is called a fistulotomy which unroofs the tract to allow for drainage. A seton stitch can also be placed which allows the area to heal. Again, I wouldn't get too caught up with these procedures unless you know for sure you have a fistula! Iron infusions are... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Levator pain and abscess?
Tara GTara G
Tara G Thank you! I am trying to be strong, but as we all know, feeling poorly for long periods of time can make you not so brave! I'm heading into my next appointment with a written list of questions so at least I can walk away with a clear understanding of what's going on. And yes, he is my original surgeon and you are SO right about the proprietary thing - I had surgery done in the ER by another surgeon, and when I mentioned what that surgeon saw, my current surgeon did get a bit ruffled!!!! [ more ]
Tara G Thank you for this response - I'm not sure why, but I will ask when I see my doctor next. The abscess is draining currently - but it's not healed in over two months, despite three surgeries and non-stop antibiotics. [ more ]
Winterberry Hello, Tara. Is he your original surgeon who created your pouch? Can you ask why he believes it needs to be reversed? Are you comfortable seeking a second opinion? Your surgeon shouldn't mind if you do. Some doctors can be proprietary! You just want to know what is going on with your body. Ask what all of your options are (make a list of questions) until you are satisfied and confident in the answers so that can direct your next decisions. I hope it can be fixed and you will keep your pouch. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Another valve slippage
Kara FredKara Fred
skn69 Hi Kara, I am so sorry...I know how hard this is...you sound so calm and level over this...I admire you...it is never easy to have to make a choice and I am sure, no matter what, that you will choose what is right for you. Good luck tomorrow and I pray that things work out for the best. Sharon [ more ]
JLH Kara Just a quick note – –tough decisions ahead of you and you know your body better than any doctor ever will. Will be thinking of you tomorrow and sending healing WhiteLight. Yes! Third time will be the charm. Janet [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
J-pouch and pregnancy
A Alimiller
Momaioneil Hi everyone! Your posts are so refreshing and encouraging so thank you all SO MUCH. Both of my tubes are blocked with hydrosalpinx. I need to have them removed in 2 weeks before going for IVF. Has anyone else had their tubes removed before ivf?? Really feeling positive after all of your amazing results xx [ more ]
Living I have a very healthy breast fed and still going strong 7.5 month old baby girl. I have had my jpouch for 5 years and didn't have any issues u till I got pregnant! Pouchitus along w multiple misdiagnosed bartholin gland cysts and still dealing with them. But as for baby she is wonderful and so strong n healthy. I worked with a high Rick pregnancy doctor that helped me soooo sooo much and we did a planned c section at 37 weeks three days. I had to get over the fact I may not be able to have... [ more ]
loloffs Hi there, I'm similar to Mrs. H, my pouch is about 10 years old. I had my daughter about 2 years ago and I was surprised to find that I felt a little better than normal "pouch wise" while pregnant. I found the pregnancy hormones slowed down my pouch a bit which was a nice break. My doctor was very optimistic about a vaginal delivery so I attempted this route and it went great! Had a bit of tearing as most women do with their first but no problems with my pouch. For me personally, I didn't... [ more ]
See all 17 replies...
J-Pouch ForumsPouchitis
Rectal cortisone help
H Halo52208
J moons Have any of you tried tacrolimus suppositories? Had to be compounded but I think it helps with my cuffitis. [ more ]
JJA The cortisone suppositories were helpful to me, but Dr didn't like as a permanent long-term solution-worries about the rectal area "thinning" over time with all that exposure to topical steroid. Unfortunately my pouchitis always eventually came back once I tried to wean off the suppositories. Other treatments for chronic refractory pouchitis can include Entocort (a designer non-systemic oral steroid), rotating other antibiotics (Levoquin, xifaxin, augmentin), Immuran or 6MP, or a host of... [ more ]
Jan Dollar If it makes you feel any better, I satisfied my deductible AND out of pocket maximum of $6800 before the end of February. The good news is no more copays until next year. Jan [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Indefinite diversion with pouch in situ (no excision)
P PeskyPouch
Kushami ❤️
TE Marie I had surgery to divert my stool to a permanent ileostomy 6 months before I decided to have ,you j-pouch removed. My Mayo Clinic surgeon said this would give me more options. The permanent ileostomy is night and day better than from the temp one! But it takes a while to get used to. You might want to read in the ileostomy topic here. The hope is that by resting your j-pouch it will heal. Then they might take your ileo down to your j-pouch after it heals. My surgeon also said the surgery to... [ more ]
PeskyPouch Hi *CJB* and thank you for your reply. I hope your cancer treatment has been successful. Whilst the recent chemo is contributing to the problems, they started about nine months after my takedown and I have had ups and downs ever since. My surgeon considers the pouch to have failed. So I think it's definitely the right option for me to have it diverted now while I'm fit ish. I coped through the chemo first time round as there was an end in sight. But now the cancer is incurable so I'll be... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Alcohol
amosamos
skn69 Red wine should work the same way that grape juice does...liquifies things...Ditto for white but less so...As for beer and other alcohols, they tend to dehydrate you more so be aware of the signs and compensate with extra hydration (or drink rum and coconut milk!) sharon [ more ]
amos Not sure ipas? Lite beer low carb? [ more ]
J moons Yes. IPAs especially. I've found red wine and domestic light beers are easiest. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Humira Questions
C capper
Jan Dollar Sometimes scopes can trigger a pouchitis flare or even an anal fissure. Perhaps that is your issue. Have you tried a course of Flagyl or Cipro to get back on track? In regard to Humira have you been on weekly injections or every other week? When I was on it, I needed weekly injections. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Traveling to Rome
G gemdori
mgmt10 I was in Rome last summer. Please go if you have the opportunity! I had no issues finding bathrooms. There is a restaurant every 100 feet! And the food is so good and fresh in Italy. I did not have a problem the entire time with anything I ate and I ate like a Queen! I want to go back! Enjoy! [ more ]
gemdori Kudos have a wonderful trip. Please let me know how you find Rome if you are traveling there as well. Thanks so much for all the information. [ more ]
iHateColitis I'm about to go to Italy in April. I thought I wouldn't be able to travel internationally after my surgery. In the last year, I've been to Mexico, Turkey, Paris, London, and now Italy. I won't let this stop me from living life. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
fillings?
I iHateColitis
iHateColitis thank you! [ more ]
skn69 Not only was it unfounded but it made a lot of money for dentists who were unnecessarily changing perfectly good amalgam fillings (about 30 + yrs) for composites (15+yr). They claimed that they cause arthritis, cancer, blood diseases and a whole basket of other diseases...do not know who started it but it caught on like wild fire... My dentist refused to change mine telling me honestly that it was all hooey... That said, the white composite fillings are much prettier than amalgams but that... [ more ]
Jan Dollar I don't know about any correlation with UC, but a number of years ago there was a phony health scare about the mercury in amalgam dental fillings. The scare was regarding systemic absorption of heavy metals, leading to all sorts of health problems. People were having all their metal fillings replaced at great expense. These fears were unfounded. Unless you have a very serious allergy, I would not worry about it. https://www.fda.gov/MedicalDev...malgam/ucm171094.htm Fast forward to today. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Butt burn tip!
C clouwho2
Lin I use Calmoseptine, which works, but I can't stand my clothes being stained (I have tried putting petroleum jelly on top of it but that is just as difficult to get out of clothing in the laundry). I have also used Critic-Aid clear by Coloplast, which was given to me at the hospital after my take down (August 2016). This works very well and very little staining. I am hoping to find a butt burn solution that is clear like the Critic-Aid but is over the counter. The ingredients in it are:... [ more ]
Jan Dollar Yes, in the US those tablets are sold as Colestid and Welchol. Essentially the same as cholestryamine. Jan [ more ]
clouwho2 ❤️
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Dry Eyes
C Chrissey86
Jan Dollar I also have dry skin/eczema in addition to dry eye syndrome. One thing that has been very helpful, other than Restasis for maintenance, is daily eyelid cleansing. I use Occusoft eyelid cleansing foam when in the shower. This has been a big help. When I have a lot of irritation I use warm compresses on my eyes. This helps the natural lubrication to flow (not the tears, but along the edge of the lids). The only moisturizer I use on my eyelids is Vaseline. Jan [ more ]
J moons Chrissey, do you wear contacts? Can I ask what other meds you're on? Yes BC cause dryness but not very commonly. Anything that dries your skin out can dry your eyes out. For instance, taking anti allergy meds like Claritin will dry your nose out (which is what you want) but it'll dry your eyes out and allergens will remain in the tear film longer. Any drugs that stimulate your sympathetic symptom cause dry eyes and blurred vision. CaffeOne also causes problems. Changes in hormones in pre and... [ more ]
Bobish Spooky, I was told me eyes were dry because I stare at a computer screen all day, and therefore forget to blink (that turned out to be wrong). Appreciate that's considered different to dry eye syndrome where the tear ducts fail to produce 'sufficient' eye juice, but I wonder how many people would benefit from just trying to keep moisturised hands and face moisturiser well away from eyes. people think that as long as the cream doesn't go in the eye they are fine, but actually the skin is so... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Incision site clothing
K KC23
Former Member This doesn't sound right; is your Doctor, Surgeon or Nurse aware of this ? Is the the wound hot to touch or noticabily warn compared to other areas of skin of your abdomen, if so, I'd say you have some kind of infection. After the creation of my J pouch; other than discomfort when getting up whilst in bed or moving from the bed to a chair, I experienced no pain at all and within 10 days my wound had healed to an extend that a dressing wasn't even required but was still applied to reduce risk... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Cleanse to treat pouchitis?
clz81clz81
KristinT Just found this forum after having a J pouch for 24 years! I suffered with pouchitis for several years and I switched between Cipro and Flagyl, and finally Xifaxin for a few years. A few months ago, I started to get peripheral neuropathy, and my thyroid was getting totally out of whack, so I decided to look into alternative approaches to helping my health and found the Whole 30 program. There's tons of information if you Google it, but basically, it's a 30 day cleanse/elimination diet that... [ more ]
clz81 Thanks everyone for the update on what you've been trying! It's funny that someone just started this tread back up, because today is the day that I'm deciding to truly start some diet changes. I'm not going cold turkey here, but starting with removal of all sweets and added sugars. I've done this before, and I did well on it. Overall, I've reduced breads and crackers...I don't eat them nearly as much as I used to. I think I will try the peppermint oil too...it can't hurt, right?! PS...Update... [ more ]
AllyKat Over a year on Entyvio and doing great! Hope I get a few years or until something new comes out! [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
1 Week post-takedown. Feeling really discouraged.
M min990
Scott F Beano works great on gas from beans, broccoli, Brussels sprouts, and similar vegetables. It has no effect on any other sources of gas. [ more ]
Vran23 Thank you so much! I think she was more along teasing me because she said also this is a Type A thing it doesn't happen as often to Tybe B people. She knows my history of going to chiropractors for my back problems from soccer and knew previously that I can't not relax to get adjustments fully. I had an incredible surgeon at the Cleveland Clinic and she honestly had the best bed-side manners and is very intelligent. She's the top J-Pouch surgeon currently there and her husband does the same... [ more ]
Vran23 ❤️
See all 29 replies...
J-Pouch ForumsFAP Forum
Thyroid Nodule - Cancer?
B BecMom
CTBarrister I am a thyroid cancer survivor. I had a nodule felt on my throat by PCP in May 2015. He told me like 1 out of 10 patients he sends for the ultra sound end up with it being cancerous and not benign. An ultrasound and needle aspiration biopsy confirmed I had papillary thyroid cancer. I had a thyroidectomy in July 2015 and they gave me the radioactive iodine 157 millicuries in September 2015. My scans since have all been negative and blood labs all look good. I am taking synthroid. Thyroids are... [ more ]
Jpouch1064 Thyroid nodules are very common in the first place. After my FAP diagnosis and surgery, I got with my endocrinologist and yes I had nodules. He has been following them for years. They have never changed on scan. I can only speak from my experience. I think the thyroid is something the docs keeps track of with FAP. I guess if one wants to know what is in those nodules, the biopsy tells all? anyone else had experience with this? I don't really know what the latest news is on FAP and the... [ more ]
jeane I just had this experience last week. My thyroid blood tests came back normal but I had a large lump on my thyroid in my neck. They did an ultrasound and needle aspiration even though the doctor felt it was benign as it was very uncomfortable for me. They drained blood and he said it was a cyst. They did send out the biopsy and I am still waiting on the results, but he felt very confident it was a beniign nodule and yes many people have them and are unaware they have them. He was not going... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Unbearable pain episodes
S shoflo
shoflo Thanks Scott I wandered about that if I'd not have to wait. I'm not using any of those meds or anything to cause slowing. [ more ]
Scott F Shoflo, are you using any bowel slowers (Imodium, Lomotil, opiates)? You could be overdoing it. Also, if you go to an ER with signs of a small bowel obstruction they might not make you wait very long. [ more ]
shoflo Thanks so much my GI doctor recommend I go to ER when the pain is happening but it so random and severe I can't even walk or stand when it happens. I see the surgeon on Monday hopefully he'll have some answers. I thought the jpouch was a "cure all" and I'd have no more problems. I can't possibly sit through a long ER wait when in that kind of pain. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis, cuffitis and a planet of regret....
HaidalynHaidalyn
Haidalyn Thanks Alibee for the great tips!! Thanks to all of your combined wisdom and advice I'm doing a lot better at the moment. Drew you're a rock star buddy! I think it's awesome you have the mojo to go to Panama and live your life. Sometimes you just have to say screw this disease, I'm not gonna roll over and die. Yes I'm sure it's not fun having to go to the bathroom off a boat but I admire that you're out there experiencing things regardless. I've been so scared to travel that I haven't for a... [ more ]
Former Member Wow. I love you guys. I'm on vacation in Panama. I was doing so well... Yesterday I'm 2 hrs off shore fishing and had to have my guide stop the boat so I could empty my bowls in the ocean. My body waited until I landed in a foreign country 3k miles away to act up. So I jumed off the boat 3 different times to crap in the ocean. Wow. My disease is not just a job it's an adventure. It could've been worse. I could have been eaten by a shark I guess. I had my take down oct 19 2016. I feel no... [ more ]
Alibee ask your GI about ENTIVIO, it's a brand new, 1st line biologic infusion strictly for UC. If your insurance doesn't cover it there is a program for financial needs. Try it. Another WONDERFUL diareah stopper that is BRAND NEW a pill called VIBERZI. ENTIVIO took too long to work for me (3months) when I decided to get jpouch, but if I had waited, my GI's patients are doing well on it now. About VIBERZI- Drug reps can send samples to your doc if your insurance doesn't cover it. Please take this... [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
After about 2 years I am weaning myself off the morphine sulphate.
BA Bill A
Alibee I have been given bottles of opium tincture far too generously by my careless surgeon. I live in an opioid epidemic state. My surgeon told me I'd be on it for life so I just gave up and started taking more. I have an Excellent GI who told me no surgeon should ever have told me about it and he helped me wean with a small daily dose of methadone (5mg). It has been working perfectly, it also has a lot of off-label uses. methadone is also excellent for shutting down bowels LONG TERM, while the... [ more ]
Jan Dollar Yes, but be sure to avoid sugar "alcohols," like sorbitol, mannitol, etc.. These cause diarrhea. Unfortunately, many sugarless sweets contain sugar alcohols. Nutrasweet and Splenda are fine, as long as you do not have a sensitivity. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Abrupt Discontinuation of TPN
Randers.USARanders.USA
Alibee Oh Josh, I am so sorry!!!! All I know of is the Cleveland clinic in PA and MT Sinai in NYC to be specialists. I'm alone and broke, needing a new pouch with no way to get one but if you have people to take what you've written and find the right doctor, start an urgent GoFundMe and use the doctors/ hospitals name in your claim so they are publicly seen- they will want to help. I really hope you have someone to help you do this advocating. Hang in there brother! You're not alone! [ more ]
Jan Dollar Wow Josh, that is a mouthful! I am sorry that you are having so much trouble. It would seem that you already have asked people with more knowledge about the ethics and legality of your treatment, so I don't think I can help you there. Playing devil's advocate here, perhaps they felt your best option was to try and repair your reason for needing TPN. Refusing their recommendations might have meant that you did not need their expertise, since you can get TPN most anywhere. Do you not have any... [ more ]
skn69 Hi Josh, First off, it is great to hear that you are still alive and kicking albeit still suffering horribly. Next, do you have a lawyer? Seriously. I have never been very into law suits and attacking anyone for anything but this situation requires some rather decisive action and no one is going to listen to the sick guy...on the other hand, they will listen to a legal document sent using strong language and lots of threatening jargon about putting your life in danger, being liable for your... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
excess gas, yellow fatty stool and burning anal pain
BB Betty Boo
Betty Boo Just thought I would post my results in case anyone has similar problems. I had an ultrasound on my gallbladder and it showed a lot of sludge! My consultant said I need my gallbladder removed as this seems to be what has been causing my anal pain, along with all my other symptoms. Hopefully this will help anyone who may be experiencing anything like this. Thanks again Bernie [ more ]
Betty Boo I appreciate it isn't caused by the pouch, but in hindsight I have had the oily output for over a year but didn't take much notice as what comes out varies as to what you eat with a pouch.....I do know that every time I have been on ciproxin, the gas and fatty stool goes, but then after about 10 days the pain starts up again and eventually all my symptoms are back. It's definitely not a fissure or ulcer as I had the scope last week and my consultant is the top man in this area (I'm in the UK... [ more ]
Scott F Fatty stool isn't caused by a J-pouch. It can be caused by medications, olestra, or small intestinal, liver, or pancreas problems. The combination with excess gas suggests SIBO to me. None of this directly causes anal pain, though. I still suspect you may have a hard-to-see anal fissure, or perhaps a very painful ulcer in the area. You could try sitz baths without any cost or risk. Good luck! [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Cipro
E Elyash
claire Scott, agree that all medications have risks and of course people need to have their pouchitis treated effectively. The issue is that there are often safer antibiotics / or other treatments that can be trialled first (albeit you personally have explored them all). Cipro is handed out very easily and patients are often poorly monitored for signs of developing toxicity. The other issue is that as Elyash mentioned, patients need to be fully informed of potential risks so that they can give... [ more ]
Elyash Thank you so much. I will definitely follow your advice. [ more ]
claire Elyash, thank you for your post. I have posted warnings on here before re FQ antibiotics also as I think as a group we are at much higher risks of getting these side effects due to being prescribed much of them due to the nature of our conditions. The health issues caused by these side effects may also be more likely to be attributed to causes other than the prescription because of our pre-existing health issues and fears of litigation. I was wrecklessly prescribed a lot of Cipro (to delay a... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Need Recommendation for Cleveland Clinic surgeon for yearly pouchoscopy
R Ryannsmom
Bruce D For a pouch exam you might consider Dr. James Church at Cleveland Clinic. He is a colorectal surgeon and did my pouch procedure sixteen years ago. He suggests follow up exams on a two year interval. [ more ]
Ryannsmom I'm sure there are different severities of pouchitis, depending on how much inflammation is present. Sounds like your case was definitely severe. I was treated with Cipro for several weeks after I was diagnosed. [ more ]
Anne B. Obviously, you must not have been experiencing pouchitis when the surgeon did your pouch exam. A C.C. surgeon did the exam when I had pouchitis, and the pain was unbelievable. Later, I was referred to Bo Shen, and he promised a pain free exam with IV meds. I will go to Dr. Shen again in the future. [ more ]
See all 11 replies...
J-Pouch ForumsWomen's Health & Pregnancy
high risk OB recommendations?
E elliepouch
yogijano Congrats ��! It's really amazing to hear success with vaginal delivery for a poucher. None of the doctors I consulted with would allow me to even try vaginal. I'm happy for you and what a birth story .. sorry it was so rough. My c section is scheduled for Friday morning .... a bit nervous for that but I guess it will be fine. Enjoy the new baby and your new life as a mom!! [ more ]
elliepouch Aahhh! Congratulations!!! I am sorry to hear about the long rough labor, but that is SO amazing that you have a new wee person in your family! I hope you are getting to enjoy him A LOT as you recover!!! I too have been actively thinking about this whole crazy question. Basically both of the Maternal Fetal Medicine docs I ended up talking to said that there is really no clear answer or easy way to avoid risk. We just have to pick our poison. (It's so good that your pouch made it through!!!) I... [ more ]
susbo Good luck at your clinic appointment! I'm sorry to hear your pregnancy has been so difficult. Yeah, I would say that the number of pregnancies I hope to have was definitely a factor. Early on my doctor said that if this were going to be my only one he'd be more inclined to schedule a c-section, but since we're thinking 3, it would be much less risky to have vaginal deliveries if I could safely do so pouch-wise. I don't know what the cause of your incontinence is, but I know one of the big... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Reactive Arthritis
AB Anne B.
Anne B. After my horrible reaction to NSAID drugs last year, I will never take another one. Sulfasalazine seems to help the pouch; not so much with the arthritis. But I can deal with that pain, so far. The most important thing is to protect my j pouch. Thank you all for the feedback. Makes me realize how fortunate I was for 20 years, before the NSAID. Just wish I was informed prior to that [ more ]
JLH celebrex is suppose to be a NSAID that doesn't upset the GI. it did, however, trigger pouchitis with me. pity as my joints had far less pain. it works for others and perhaps it could for you? ask your doc. levequin caused extreme tendonitis throughout my entire body. i was very fortunate in that it went away once i stopped the meds. that too was a pity as it kept the pouchitis under control. others can never get rid of it, according to web testimonials. hope you feel better, janet [ more ]
Anne B. Thanks for your replies. Now I know I'm not the only with associated arthritis to our bowel problems. I recently had cataract surgery, and having very slow recovery. Inflammation there too. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Nausea, Headaches, and Sleepiness
alecz222alecz222
alecz222 My yearly appointment with my doctor is coming up soon and I plan on discussing these issues with her. My job actually requires me to be on a computer a good bit of the time but I am going to try to find some ways to get my eyes off the screen and maybe do something else, if I can. That could be beneficial for not only my mentioned symptoms but also the fact that my back hurts alot due to my always sitting. [ more ]
skn69 Another thought Alec, How much time do you spend on a screen? Whether it be smartphone or computer, the constant ocular activity could cause both the nausea and the sudden headaches... Just a thought. I think that you can track a lot of your symptoms on a health app available on Samsung and Iphone. Sharon [ more ]
Jan Dollar What does your doctor say about these symptoms? In particular, I'd want to get to the source of these headaches. They seem like migraines. Since they are frequent, even though fleeting, they may not be benign. The nausea and fatigue could be part of same issue, but they all be completely unrelated. Jan [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
GI bug in Bangkok, ER in Qatar--serious dehydration
J JLH
skn69 Oh goodness, Janet, I am so sorry. What a horrid way to end a lovely holiday. You should head out to see your GP now that you are home and get a full panel of tests done before you consider going back to work. Make sure that whatever was eating you is all gone... No, as k pouchers (or j pouchers although they tend not to irrigate their pouches like we do) we are not like other people, we are more prone to attacks from insidious bugs, nasty germs and contaminated foods...Although I am far... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Has anyone ever listed the possible k pouch complications?
skn69skn69
JLH hi all--thought this would be a good forum to ask if others have experienced a puffed out stoma area, say about 2-3" in diameter. if so does it means a hernia or slipped valve or what? it happens even after a full evacuation with lots of irrigation. i have no leakage. my stoma used to lie flat on my belly--am thin and have very strong core muscles thanks to daily pilates and yoga, so the protrusion is very obvious. i have been having difficulties intubating--the valve is no longer a straight... [ more ]
skn69 It is not embarassing (at least after a couple of dozen of them) and I no longer notice because I am so busy watching the screen to see what is going on in there! I wear very low undddies that he sort of covers with an absorbable cloth (you need to tuck it under too) as well as a T shirt that I pull up to show my abs and stoma. (no more exposed than if I had worn a bikini. You need to guide the radiologist. You need to tell him where you feel it was and is now and the direction that the... [ more ]
KrayH Thanks for your reply Sharon......we've all here had procedures that stripped our...well... dignity. R u saying the surgeon actually needs to empty the pouch in the office? I'm cringing at that thought. We all must do what we need to do.... I might need some general anesthesia ������❗️ [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
MLB pitcher Jake Deikman talks j-pouch surgery
Bill JohnsonBill Johnson
Mysticobra No shame in what we have gone through. We should be heros. In fact. We are heros. Anyone who can go through this and come out the other side with a positive attitude. Well. Is a hero. We go through alot to get to our destination. R. [ more ]
KC23 Always good to see "famous" people come out and talk about there conditions to the world, unashamed and as encouragement to others who have suffered similar health issues [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Red raw irritation around stoma
K KC23
EricaLeeJpoucher My incision was stitched close and my surgeon took the stitches out after a while. Am I the only one who had stitches in their incision? [ more ]
min990 I should add that my incision site healed in 3 weeks, and I was dressing free then. Now the scar is just shrinking and changing colour (which in itself is a year long process) [ more ]
min990 Hi KC23, Most surgeons opt for an purse-string suture closure (aka open closure). It looks like this: FIGURE-2-Pursestring-closure.png The muscle layers underneath are closed the traditional way, just the skin is left slightly open. It heals in about 3 weeks and ends up looking like a gun shot wound. So you might want to get creative with your story. Studies have shown that cosmetically, the outcome is similar in terms of patient satisfaction. It just looks uglier for the first few months. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Medical Cannabis
FM Former Member
StarryNight Here is a link to a brief article explaining, among other things, why some CBD oils are legal in all US states and, therefore, are available OTC at many health food stores. https://m.facebook.com/LifeSou...38533821/?type=3#_=_ [ more ]
TinCan Yes, I take medical cannabis everyday in the form of a tincture. I predominately take a CBD heavy form of cannabis as it has shown the most promise to date as an anti-inflammatory. As mentioned in a previous thread, I also take an over the counter form of CBD oil called Charlotte's Web offered by the cwhemp.com. It contains an extremely small amount of THC (thus making it legal to sell as a hemp oil food). [ more ]
Tino2000 hey bobby, what type of cannabis are you triying? do you smoke or you have oil? do you take it all day? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
15 days since takedown surgery
rlbliferlblife
rlblife Thank you all so much- today marks 3 weeks since my surgery and I am literally taking it one day at a time, yesterday I was out walking around for 3-4 hours, today I had to come home after less than 20 minutes... I know in the grand scheme of things that this will all pass, but wow, this last surgery really has me wiped, and getting off the steroids isn't helping things at all. I am sure its a big contributor (because my bloodwork is back and my counts look good, I am not dehydrated and I am... [ more ]
Jan Dollar I'd like to say there was some vitamin, diet, or exercise regimen to speed up this process or make it easier to deal with. But, unfortunately it is time and patience that is needed. Forcing yourself to go out, feel sun on your face, interact with others, etc. does help. It does not speed up the process, but does help get your hormones pumping and your brain working. It helps to ward off depression, which is easy to fall into when you are dealing with chronic fatigue. Jan [ more ]
rlblife Thank you guys, I agree that the combo of surgeries and adrenal insufficiency is a really tough one to bounce back from. The encouragement means the wold, and any tips to help get my energy back would be AMAZING! Without an appt or NEED to leave the apartment it feels like I could easily stay all day, yet I always feel better once I get outside, hmmm. [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Revision to valve or create a Koch pouch
B Bodoni
JLH In NYC I go to dr. Kiran at Columbia-Presbyterian for my k pouch maintenance. So far I've only had a check up with him and no surgery, but I may be needing a little tuck and nip as a hernia has gotten larger. At least I think it's a hernia. He had been at the Cleveland clinic for training. So far I'm very impressed with him and his staff. Who did your original surgery? What's the problem with the valve? Janet [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Anal bleeding, Pain, Cuffitis? Annucort Need j-pouch Dr. in Atlanta area
O oreoparent2
Jan Dollar It would seem that you still have a fissure, which would explain the pain and bleeding, and even the spasms of your sphincters. Fissures tend to be recurrent, so it is unclear to me why your current doctor is not considering it. If you can't get the HC suppository in, you may also have a stricture. It is easy enough to diagnose by attempting to insert a finger past the suture line. If it is too tight due to spasms, you might try inserting the suppository after a warm sitz bath. This sounds... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Leakage with j-pouch
FM Former Member
Former Member The surgeon also mentioned that a scope will be necessary to actually see what's going on that's why they cannot positively identify what the issue is. [ more ]
Former Member So today I seen a surgeon who works at the hospital I had my surgeries at 6 years ago. He said that he believes it could either be a prolapse or it could be many different things, however, since it's a children's hospital I have to go see an adult colon and rectal surgeon which I do understand it's just hard to find someone with experience with j-pouches. So I guess for now I am being treated with a hydrocortisone suppository to help with the inflammation they do suspect in my last section... [ more ]
Pouchomarx I had my pouch redone about 1.5 years ago by the great Dr Remzi who used to be at Cleveland Clinic. He also did a mucousectomy which is pretty standard with a redo. I have had very minor leakage as well even when I had the ileostomy. I was told it is somewhat common with a redo. Its not horrible and I do used a small square of toilet paper up against the hole, sometimes there is a small spot of stool and sometimes not but I keep it there just in case. I had a scope 4 months after takedown... [ more ]
See all 22 replies...
J-Pouch ForumsPouchitis
Managing Intermittent Strictures, Fissues and hemorrhoids
M MikeJC
Carey Ok thanks all I will find a gastro and make an appt I didn't always have this much trouble and pain (I have had my pouch for 20 yrs ) maybe because I'm getting older and things just don't work as well as they used to sadly enough. [ more ]
MikeJC Yes, Agree with Jeane. Take antibiotics Carey and don't suffer! I respond well to CIPRO. Some do to FLAGYL. And some take both for the maximum impact as these two actually tackle AEROBIC and NON-AEROBIC Bacteria differently. ( Please consult you're Gastroenterologist for this) Ease off the dairy aswell and any trigger foods for you for faster results. If you are stuck in a bad spiral as well, consider taking a course monthly (e.g) 1 week a month for 3 months so there's some support built in... [ more ]
jeane CArey, Don't suffer take the antibiotics. Within a couple days you should feel better. You prob need a good gastro to help manage your symptoms. Sorry you are not feeling well. [ more ]
See all 30 replies...
J-Pouch ForumsGeneral Discussion
Endoscopy phobia, anyone?
I Ikh
Ikh Ciao Jan, my problem is the air... We in Italy are using the flexible sigmoidoscope... Thank you. [ more ]
Jan Dollar Some folks here still get their exam via a rigid sigmoidoscope (sometimes called the chrome broomstick). I haven't had that since flexible fiberoptics were invented many decades ago. That device is indeed painful. Most of us are scoped with a flexible sigmoidoscope, or even the more slender pediatric scope (what my GI uses). These are not painful, but there is some pressure and cramping from the air that is pumped in. I have not had sedation since my colectomy, and haven't needed it. Jan [ more ]
Ikh Thanks to all! Perhaps my first endoscopy was unconfortable because of my tension or perhaps the equipe was not very good (I'm not the kind of person who always criticizes but the doubt could arise). [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Cuffitis or Pouchitis or Combo
KPKP
Jan Dollar You can have an abscess without obvious pus draining. Often, it is just bloody or blood-tinged serum. With an abscess, it is very painful before drainage, and just tender after it drains. If in the anal canal, the open edges will be sensitive to fecal or urine drainage. Jan [ more ]
KP Thanks for the reply! That makes sense. I can add cuffitis to my other issues. I recently read that before fistulas open, they often feel like a bump, boil, bubble, or zit. I've definitely felt what I would describe as a bubble on the right side of my anus when having issues emptying. I've probably felt this bubble 6-7 times over the past year. Not typically painful to sit down or touch, but it burns once it's open. I thought it was an inflamed hemorrhoid and maybe it is. When I notice the... [ more ]
Jan Dollar Bleeding is the hallmark of cuffitis, but you can have minor inflammation without it. Otherwise, the symptoms are the same as pouchitis. There are no pain receptors in the rectal or ileal tissue, so that "broken glass" pain is due to damage in the anal canal. There are a lot of pain receptors in the anal canal. Fissures are the likely culprit of pain with bowel movements and minor bleeding. The discomfort associated with pouchitis is due to stimulation of stretch receptors (like gas... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Is this normal?
PO Pressing On
JLH Happens to me often. Chew! [ more ]
skn69 Pressing on, Like Bodoni says, things can get dragged out or trapped in the valve during intubation and migrate their way out on their own, it happens to me often. I have a crook in my valve (like an elbow) and things just get stuck in their...About 1/2 later they pop right out (sometimes it is a tsp of gunk that slides out)...no biggie. On the other hand, things can also get stuck further down the canal and partially block the tube open and then allow air or 'stuff' to come out... [ more ]
Bodoni I have a K-pouch. Once in a while, when I am pulling the tube out....it may leave a piece of food in the valve tract. Then, some time later, that piece of food will come out on its own. This is normal. My pouch at times will release some gas/air. In theory - it should not leak air or gas. But my valve is a bit slipped - so you can't go by me. If it only leaked a bit of gas once, it's probably nothing. Now, if it leaks air a lot - then I would call Sue Kay and let her know. Keep us posted. [ more ]
See all 3 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×